Calm Amongst the Chaos?

Life Lessons

2012-01-27T13:21:00.000-08:00

Lily is eating better. I found out she loves avocado. I found some tortilla with very low carbs and who doesn’t love a cheese quesadilla? She likes a cauliflower mixture with cream and chesses that I think tastes like mashed potatoes. So I am feeling better about her getting more food in. Not happy that she is getting no relief on the seizures. This morning I had to wake her for school and I just knew I didn’t want to do that because of course that sent her straight into a seizure. But after it she ate and went to school happily so while it sucked, she is so used to them it is just part of her life. I am told to be patient. 9 years of being patient. Guess we’ll just continue being “patient”.
Andrew has been gone this week to South Dakota and I have been holding down the fort. Parenting is just not the same with only one adult. I give so many props to single moms, military moms, and moms with husbands who work out of town all the time. It is hard work! And not just missing the help with the kids, it is someone to talk to at the end of the day in bed. Someone to say “man what a day” or to giggle with about something silly the kids said or did. I am not looking forward to tomorrow it is going to be a hectic day Saturday. I am looking forward to Monday when he finally makes his way back.
I had to spend my morning at the court proving I do have insurance and paying $250 for a ticket I cannot attend traffic school for because I already been there done that just a few months ago. And it is my fault. I can’t blame the police officer. I can’t blame anyone but myself. I’d like to blame my overwhelmed brain, but that’s like a drunk blaming it on the alcohol. I have so many other ideas of what to spend $250 on. It just made my gut sick. BUT I have to say, I have gotten pulled over at least 6 times in the past 10 years and never gotten a ticket, I always drive too fast. While I do think I am a “cautious speeder”, but maybe that is a little like a “responsible drunk”, all those warnings were making me feel invincible. I mean I was pulled over at least 3 times in the past 2 years alone. I shouldn’t be driving so fast. I need to be reprimanded and believe me having to write a check for $250 made me want to vomit. But I bet you one thing; you won’t see me with another speeding ticket. At least not until I can attend traffic school again, I kid.
This day made me realize how much this felt like being a child and being held responsible for my actions. It sucked, I was mad at the cop (not his fault), annoyed with the court clerk who told me I had to come back to see the judge (not her fault), annoyed that I couldn’t smile my way to a lower fine with the judge (not his fault). Mad at my smile that seems to not be working like it used to? Ok maybe. But I pouted a bit and got over it and it left a huge imprint on taking responsibility for my actions. I realize with my kids it is the same way. Warnings are nice, they let you sigh in relief, but they also don’t teach you much. This was a great learning lesson for me today. And if life is anything, it is all about tests. Some tests we pass, some we fail and have to retake again. I am thankful for a gracious and merciful teacher who hands me the test and says this time you’ll do great.
Things are crazy, things are hectic, and things don’t go the way I want them to, especially as of right now. I have about 10 things I’d like to just change with a snap of my fingers, but that won’t happen so what I am going to do is keep moving forward. Keep trying to pass my tests and keep learning from my mistakes. I figure if I keep up this attitude by 100 I will be perfect.

Seizures, diets, new bed .. Oh my!

2012-01-24T14:11:00.000-08:00

Seizures are the devil. I hate them. Lily is on 4 anti seizure meds. 4. Have you ever read the labels on anti seizure meds? Ever listen to a commercial talking about a medication for foot fungus and hear the side effects and figure you'd rather just have foot fungus? Yeah it's like that. We're no stranger to AED's, we're no stranger to lots of them, but 4. That's just dumb. Plain ole dumb. But you'd think, well with 4 AED's the child couldn't possibly have seizures, right? Well that is where you my friend would be wrong. Lily still does in deed have seizures and wanna hear something else on top of it all? Lily got put on a modified atkins diet. This means hardly any carbs, tons of fat and no sugar. Oh did you know that already by the no carb thing? Well things were starting out ok last weekend, then by Monday she took a turn south. Started refusing everything. Everything. She is getting keto-cal, which she actually loves (a formula for kids on keto diet, like her diet but even more restrictive), she likes this smoothie I make that is a convert of a smoothie I drink every morning, a combo of heavy cream, water, ice, low carb diabetic yogurt, peanut butter and a bunch of spinach, she likes that. And she likes a yogurt whipped cream combo and this is literally only whipped cream with a touch of sweet n low and don't even get me started on my kick of I hate all things unnatural, especially with fake sugars. I had a waitress tell me Lily should not have a diet soda because it contains aspertine. Thanks lady. Appreciate that little nugget. So we are on week 2, on week 4 we can more than double her carbs and maybe life will be better but as of right now she is hating life and that makes me hate life. Feeding Lily has always been a time consuming event, but now it is like a marathon event that you keep falling before you reach the finish line, and you will only get the yogurt in and she will spit out that yogurt if you even think of slipping her meds in it. Something we were always able to do with full flavored yogurts/puddings. But maybe this isn't the diets fault, because Lily has on occasions gone on not eating kicks and I am thinking this may be more of one of those events because at a point of desperation I took 1/8 C of her favorite greek honey vanilla yogurt (her allotted amount of carbs for the day), the stuff that tastes like sweet heaven, and tried to get her to eat it and she refused that too. The only protein she is getting is in the smoothie. She drinks, she just doesn't want to eat. I promised myself to give this the full college try, but considering I only went to college for one year and that second semester only ended up being a first aide class after dropping anything that mattered so I guess the old college try may not be to me what others may think of it. To be perfectly honest here, I have always been afraid of the day Lily stops eating. It happens a lot with kids like Lily, and I never want that to happen, but if I had a button to put her meds in??? Man life would be a whole lot different. I can't believe I even wished that. If you have known me these last 9 years, you know I pride myself on no button for Lily. Many kids like Lily and in better shape than Lily have buttons. Lily has always eaten like a champ so it really sucks that I am saying this. Meds never used to be an issue. I am being cleaver and figuring it out how to get them in, but it is hard. And there were days when I don't think she got any and no wonder her seizures are a mess. The mom in me is ready to give her a carb hog day and let her go wild and see if she starts eating again, but the stubborn in me says we've made it this far we must go on. I'd really like someone other than myself in my head to argue with, but then I imagine I'd have a whole nother world of issues to deal with.
So right now Lily and I battle each meal. It sucks. I don't want her to have brain surgery yet she is on 4 meds that do nothing and a diet that seems to do nothing and has a neuro that seems to think surgery will do something. I am a mama that wants someone to write the play book and I read it. Preferably available on audible.com.
Lily did her get new bed. That is an awesome thing. I'd love to share a picture, but life isn't that easy with out your camera. I can't post pictures on the blog of what I took with the ipad. I know, right? A sphincter says what?
But I can say one piece of positive news, I apparently was carrying a huge load on my back before this new bed came. That first night, after we said our prayers and I tucked her safely in, I slept a whole different sleep that night and could honestly and literally say I felt lighter.
Man, I can't imagine how I'd walk if we found some way to get these seizures back under some control. I'm not asking them to go away completely, I already know that is not a hill we can climb, 9 years of evidence shows this truth, but to be back where I don't have to watch her go stiff, hit her body on something near by, go red, stop breathing for moments of time, maybe that would make my steps feel like air. And who cares about me and my walking on air, what about Lily? I bet her nights would be a whole lot different without waking to seizures and sleeping to seizures. My poor precious girl. We need to find relief.
Ahhhhhhhhhhhhhhh the sweet relief of verbal diarrhea. I feel a little better. How about you?

Resolutions?

2012-01-22T15:45:00.000-08:00

"Too broad" my friend Codi says to me on New Years Eve as I tell her my resolution. But it was way too late into the night to really have any sort of meaningful conversation with me, I am sure at the time I thought it was meaningful, but by the next day it was lost in a huge headache. "Too broad" was right though I mean I said I wanted to live life fuller. I knew what I meant, but that could mean travel the world, leave my family to travel with the Renaissance Festival (a thought that does cross my mind at least once a year), or it could mean to sing and dance while we clean the house. I mean we all want to live a fuller life. We want to be in our lives enjoying each moment, right? Well maybe not those who live in their own filth on Hoarders, but are those people real anyway? But wanting and doing are two totally different things. Like today all I want to do is sit at my laptop and write. It's been too long and I really wanted to commit to writing more, it is what makes me a better person, yet if I am really trying to write and Oli keeps coming up to me to reload his nurf gun telling me he wants to "shoot people" every 5 seconds and it is frustrating me am I not living fully? That is where the line gets blurred. One side if me would see living for myself as locked up in some beach cottage alone probably drinking way too much wine spending my time writing. Yet another side of me, the bigger side of me wants to live for my family so I will continually stop to fill his nurf gun, get up a million times to help him leaving whatever I write to be nothing but crap. Mindless mumbling that goes no where. I drive and I think of things I want to say, want to write yet it just gets lost in my head along with seizure meds and diets and practices and a job and another job and dinner and oh maybe something fun to do with my kids that has nothing to do with any of those other items listed above. Then I go on pinterest and get linked to blogs where these people have it all together. Rules for raising sons. Rules for raising daughters. Rules to be a better person. Rules for passing it forward. All beautiful things. Things I can totally see myself saying/writing if I weren't on overdrive in my real life. So I wonder are these people locking themselves in their room and letting their kids fend for themselves? Or is that my jealous assumption to what most likely is they have the rules figured out and their kids sit and color with each other politely asking each other for the blue and green crayons? And is that yet another judgement to the fact maybe they need less sleep than I and are able to stay awake til 11pm and instead of spending their time rolling their eyes at the real housewives of whatever county knowing full well that the "real" housewives realize that their kids bus driver saw them in the same shirt for 3 days in a row and that is what it looks like to be real. Whatever judgement I place on people who have their act together is all about me and where I feel like I am lacking in my life.
I have so many wants that may actually be needs, but they never make it past the whirlpool going on in my brain, so when I said I want to live my life fuller I meant I want to be in every moment. Yet this moment, the one I want to write in I have a little boy who won't give a two second break to actually think one coherant thought. So here I am thinking whose life am I supposed to live fully? His or mine? Are my dreams set aside when I had kids, let alone 3 of them? Do you put aside your wants for them or do you try to do both? I feel like I am failing miserable on all counts because I want to do it all. So when I say I want to live fuller that is so incredibly broad and something easy to say, but what I want from that statement is a different way of living. I want to play with my kids. I want them to remember a childhood of silly dance parties, edible dinners and a mom and dad that laughed with them. I don't want them to remember me on my laptop ignorning them. But I also want them to be able to look back and read my thoughts on these years. Look back and respect me for working to help our family and understand I worked to make a difference for kids with CDKL5. I have to find a way to do everything at 100% instead of dividing those things into 100%. But the first step is knowing what needs to change, right? Having intentions to do better has to be a great place to start.
Maybe next year I will quit smoking. Which means I have to start smoking this year.

2012-01-12T08:35:00.000-08:00

So I'm taking Andi Jane to a chiropractor. He's a pretty cool dude and works super awesome with kids. I'm taking her for a whole battery of things, but mostly bedwetting. Please don't tell her I told you. I have 3 kids ages 9, almost 7 and nearly 3 and usually one morning I am washing sheets for leaking though pull ups/diapers whatever. It sucks!!!!! I'm so afraid Oliver will be on the same road as Andi. People say oh they're ready for potty training when they are dry at night. Well with that logic Andi would still not be potty trained. And Oli does fairly well in the day with me but by no means dry at night. I don't send them to bed with drinks. Andi gets a sip of water and Oli doesn't even get that. No sippy in bed, nada. Lily goes to bed with 2 diapers and still soaks through. But that could have something to do with the quality of the state given diapers. Not complaining just saying. After Andi's second appointment she went a whole week dry at night. I thought we found the cure only to have her only dry 2 x and not consistent in 2 weeks. I don't know.... It isn't cheap nor covered by insurance so I'm praying I didn't waste our money. I am also taking her in hopes to help her with her with focus. She really looses focus and often. Even her most recent report card said she is smart, wonderful, helpful, etc JUST that she struggles maintaining focus. And she has a wonderful teacher who works very well with her so I really take her criticism to heart. We tried the whole medication route and I was unsure about it and when she was on it I knew that clearly wasn't the option for her. Not knocking those who do, it just wasn't for us. So anyway, trying to work with this chiro on some issues. He mentioned removing milk and wheat from her diet. Ha. Oh man. Andi was in tears on the way home last night, thinking about no milk. I told her it was worth a try for a week, but I'm gonna have to search hard for replacements. She is such a cheese and milk kid.
I'm gonna start Lily on the modified atkins diet soon and need to go looking for replacements for her as well. Since she is an oatmeal, yogurt, pudding kind of kid I'm not looking forward to it. But since seizures haunt her no matter what we do we are coming to an end of the road for treatment options. Neuro is pushing surgery as next resort. Andrew wants me to ask about some medical marijuana we saw on weed wars. I
don't even know where to start with that. What we saw on the show was a kid with really bad epilepsy, wheelchair bound etc and he took a
kind that doesn't have what gets you high but at the end of the show he went 4 days without a seizure. But I don't know what happened after
that. Lily is on 4 nasty meds, I am not against that sort of treatment if it actually had some data behind it, God knows a natural substance
has to be better than what she is taking now. But this is all controversial and I don't even know anything about it. The show makes me mad
and I have a hard time taking it seriously when the checkout kid eats an edible while on break and can't even ring up customers afterwards.
That sort of discredits it all to me, but the part with the epileptic kid did intrigue me. So anyway that is where we are at. Lily had a big seizure
this am. She had been doing great after we increased Zonegran and I think that med has been very helpful but they always seem to come
back. They've been working their way back since last week and now they are back on a daily basis. Suckity.
Suckity.
Well aware iPad that is not a word.
Speaking of iPad. Lily got some gift cards for iTunes for Christmas and we got some great apps. She seems to be using the app that looks
like and works like a switch the most. It is very basic, we got other more in depth ones, but for right now this one seems to be working pretty
great. I can't believe the way technology has changed. A communication device can go for thousands and now thanks to iPad it can be much
cheaper AND I don't think mommies can check their email, play words with friends and update their facebook status on a regular old
communication device :) cheers.
And last update is on Lily's bed. They were supposed to come yesterday. Supposed to. I spent my morning taking down Lily's bed. Cleaning
out her room, throwing away old toys (which is incredibly hard to do after Toy Story, you can't help but think oh my gosh what if she really is
alive and I am throwing her away), I had her room looking like a big clean open space and ring ring.... We can't come til Friday.
Ooookkkaaaaay.... Hmmmm... Well now she has to sleep on the floor. Sorry ma'am is what I heard on the other line. Gahhh! Poor girl, she
seemed fine, I had a ton of blankets down for her, but I hate for her to have to sleep on the floor. I'd update with pictures but for some
reason I can't upload pictures from the iPad to here (not that they are good pictures anyway) and with a heavy heart I have to report that my
Nikon is now resting in peace. After many real tears, no joke, I really don't have my Nikon anymore. It was in Lily's backpack and someone
took the kids for a walk, threw a water bottle in the same backpack for the kids. Water bottle leaked and I came home and found all this. It
was like a death in the family. But there was nothing I could do. No one to yell at. It was a total accident. A total ugly heart breaking
accident. I'm still trying to find the beautiful in that ugly. I guess being able to not flip out has to be some sort of credit due to myself. Our
laptop is almost on her way out as well so I don't even have anywhere to load my photos right now so I guess it is just something I will be
without until I can save a little moolah. Right now our savings is going towards a trip to New Orleans at the end of June (if we can get help with the kids, unless I am going solo to the Rett Syndrome family conference that is letting our CDKL5 family have a conference within
theirs!) and we really want a get away with the kids this summer. It's been way too long since we've been to the beach so that is my goal for
2012. Family vaca, cdkl5 conference, new camera and a MacBook. In hear if you visualize things happening they will so that is how I see
our 2012 unfolding.
Alright enough from me for today. Keep Lily in your prayers. We'd really like to see some changes in seizures this new year.

Another year older, another year wiser???

2011-12-29T11:59:00.000-08:00

I turned 33 last week on the 19th. And while it wasn't my favorite day this year, it was ok. I'll have others. My day started nice enough with Alex the Elf sitting on my new Kerug coffee maker. I always thought they were cool but never thought we'd own one. I had been fine with my coffee pot from 82 since 82. Ok not really 82, but it was old and just fine. Even if it leaked coffee each time I poured it, it was fine. But yay, add to my addiction please. Thanks hunny, that was sweet!
After that I had to get Andi ready for an appointment with a new Dr. Actually it is a chiropractor. There is a lot behind this and after this, that instead of totally throwing this post on a tangent I will just promise to comeback another day and talk about the specifics of all that. On our way to the appointment Andi Jane bursts into tears after I explain to her that us moving to a farm for her birthday probably won't happen. After she wouldn't stop I said Andi, "it's my birthday, can we talk about this later?" Whatever, we get to the appointment, the guy is amazing and worked so well with her. It was a great appointment, I was encouraged, she was excited, yada yada... "ok let's go to school!" "No" "No?" "No I don't want to go to school, my back hurts now" (as my eyes roll) "you are going to school" this was the conversation all the way to school. Cut to me in the parking lot trying to pull a 68lb kid out of the car while she is SCREAMING and fighting me. Yes. This happened. Oh did I mention it was my birthday? We hadn't experienced a fit like that in at least 6 months and she let all those frustrations explode out of her right there in the school parking lot. I slam her door and say fine, you can go to work with me and when we get there your dad will take you to school. You might need to throw in a $ and an # and maybe a $%#$*@$(@*@*$(& as well if you want the exact way the story went, not proud, just honest. It was infuriating. She got me. I am a patient mama. I am one very patient mamajama, but I have a limit and unfortunately when my limit is hit it is not cute. Not at all. So then we drive in silence. I am very certain there was steam escaping my ears. There had to be, I don't know where else it could have escaped from. We get to work and dad takes her to school. Not one peep from her to her dad. She just rode quietly to school, got out and went to school. Curses. Yes, many. Oh did I mention it was my birthday??
From then on I worked. Had lunch with my sister and hubby. (yes my co-workers are my sister, my husband, my cousins husband and a sweet girl that has worked for us for over 10 years, to say were a family business would be correct) but my mood was just even. Not down
but certainly not up. It wasn't my 16th birthday. It wasn't anything special, but typically don't we all just have a certain beam in us on our birthdays? Maybe not everyone, but I do. At least usually. I've been at therapies with Lily, the hospital with Lily, I had OB appointments, I have been sick a time or two all on my birthdays and none of those put me in the mood like having a fight with my daughter. I felt
disrespected, devalued, a person with no sense of authority, embarrassed and sad. I let a 6 year old do that to me. The rest of the evening
was nice, beer and wings with Andrew (yes my choice) but the day just stayed on an even keel for me. It sucked that I was unable to cheer
up. I was unable to change my attitude, but it was what it was. I needed to share that background to go forward.
I'm reading errr rather listening to a book that was read by some friends in a book club that I rarely can ever attend but I like to read what
they are reading, it is called 1000 Gifts. It's not exactly a book I would pick up and read. Well the cover is very pretty, so I may pick it up
but if I read the back I'd probably put it back down. It is a religious book so you faint of heart for Jesus soooo would not like it, and even I
someone who proclaims to the world that Jesus rocks my socks has a hard time listening to something too preachy and I bet myself a
couple years ago would tune out on this one, but you know why? Because of the truths the author speaks of. No one wants to know how
they are doing things wrong, not unless they are willing to make changes of course, so this book has been very challenging for me. I love the
authors writing style, very poetic and I like that she is the one who reads her audiobook. She has a cute Canadian accent that I like to copy
while in the car. But that really wasn't necessary to share. But you should hear me when I am listening to a book read by a British reader.
Oh cheer-io. I so wish I had an accent. Wow. Ok back to my book. She starts by sharing some of her life experiences that were really awful,
she saw a lot of tragedy and darkness but she started looking into what the bible says of giving thanks, eucharisteo, and being thankful and
finding you joy through being thankful and it really changed her life. It was a small project of writing 1000 gifts in her life that just grew and
grew and she now is blessed because she blesses others. Its a beautiful book, I am near the end and my mind has just been so wrapped
around it all and that is why I go back to sharing my birthday. Not to complain, not to be felt sorry for, not for parenting advice for an out of control child, but who I am, where I am and where should I be and who I should be. The book makes lots of mention about people who feel entitled to happiness and do what they can to be happy tend to be pretty miserable people. Also when we have expectations, we are always let down. Like for instance my birthday. Why did I feel that I should have this extra special glow on my birthday? Do I deserve that? No. So why did I expect it? So I share my birthday experience and this book because it is changing my thoughts. She also mentions in this book about how many times she washes dishes (she is a mother of 6!) and expected thankfulness from her family and when she doesn't get it she is upset, disappointed, sad, etc but then she says what if every dish I wash is like washing God's feet? Blessing him. Ok this was a huge point she hit on me because I feel disgruntled every time I do dishes. I hate them so I am annoyed that I am the one who most often is doing them, so when I heard this I thought oh yuck, I can't think like that. I can't feel like I am blessing God, I want thank yous from my family. But then when I dig deeper and really think about this, how do I really want to feel from the inside? Do I want to be "right" on all accounts that it leaves me feeling annoyed, frustrated, grumpy? Or do I want to feel good on the inside and feel joy that only I can decide for myself to feel. And when I think of how I parent when I am full of joy and how I parent when I am grumpy and frustrated those are two different me's. And it doesn't take a rocket scientist to know which one produces better results.
It's not easy being thankful. It's not easy finding the "beautiful ugly" as she calls it. But it is so necessary to do so.
So this 33 year old woman is kind of lucky in a sense that I get a whole new year with my whole new year. A time to look back on what I liked about 32 and 2011 and what I want to change moving forward as a 33 year old in 2012.
I want joy and I feel like I have the tools to find that joy. It will never be with a new house, or a farm (Andi....), or more money or more of anything. It is finding your joy in your house, right now with what you have.
I look forward to a new year with new insight. I pray that I am able to stay on course as this year goes. I am challenging myself to find that beautiful in everything, even the ugly and I challenge everyone else as well. It's not easy, but it's also not easy for everyone around you when you choose to be angry over the expectations you put upon everyone else. So cheers to 2012! I look forward to what I will bring to YOU.

1. Sunshine on my face
2. A city surrounded by mountains
3. Crooked teeth smiles
4. Sparkling blue eyes
5. A boy who is hard to understand
6. A husband willing to swallow his pride and make changes for his family
7. A sparkly blue wheelchair
8. Big round brown eyes

What are some of your 1000 gifts?

1000 Gifts

Christmas came and Christmas gone

2011-12-26T14:47:00.000-08:00

Here I sit on the day after Christmas. The day that all of a sudden I realize I have no elf mischief to figure out. No wrapping to put off. No shopping, no baking, no cooking. Andi Jane is at a friends, Lily is resting after her caregiver fed and bathed her for me and Oli is quietly playing with all his new toys. I am awaiting others to make a play on words with friends and pretty much got all caught up with what everyone else did yesterday on Facebook. So here I sit with my feet up nonetheless while hubby watching some show about a pawn shop while he switches back to a show about coast guard tryouts. I sit with Lily's iPad on my lap trying to type out a blog on this keyboard that I am not a huge fan of, yet too cheap to purchase a keyboard for this thing. I guess what I am trying to say is this may be the closest to bored I have been in a long time and probably the last time in a long time. It's quite nice to be honest. Christmas time seemed to have flown by as it always does, but I wasn't too sad for it to be over. As much as I love it, I never realized how exhausting it is for parents and it seems the older they get the more involved it all is. And to be totally frank, I will be happy when my kids realize we are Santa. I never cared much for the whole hoopla of him anyhow. Maybe it's because my sister was a bit of a jerk and ruined the whole thing for me before I ever really got to enjoy the idea of him, maybe that is just me projecting that upon my kids. Maybe it's because we do a whole lot of work for him to take the credit and maybe it's because The birth of Jesus really gets over shadowed by him. (excuse me while I get back into my bored position. I needed to change a poopy diaper and run to walgreens for some pepto for the hubs....ok ...feet back up.... Ahhh.... Ok)
So where was I.. Oh yeah Scrooge mode. Not necessarily, I just first hate lying to my kids. Especially with Andi Jane who is well beyond her years. This is the same kid at 3 asked why Santa had the same wrapping paper as us, at 3! So her questions get more elaborate and it's getting hard to keep this whole thing going. She still totally believes. How do I know this? She told Chelsey (Lily's amazingly wonderful caregiver whom is only here during her Christmas break, all our caregivers are wonderful we are very lucky, but it's a special treat to have
Chelsey here for this short period of time) Andi told her that Santa brought her the dollhouse because her parents would have never bought her that. Pretty funny she said that because she watched her dad put it together and we all knew he'd never choose that project on his own.
Anyway, knowing Andi we wont have too long with her still believing, but I am pretty sure she'll help Oli still believe. So who knows how long
we will be figuring out what Alex the elf is doing each night. Although when they do realize it all, they may not think it was that funny that
"Alex" drew mustaches on their faces.
Our Christmas was wonderful. Christmas Eve was simple, we just hung out at home, I baked a lot then we volunteered in our church nursery
and after went to the 5pm service. Lily's class didn't meet so she sat with us. We were pretty close to the front and she was great the whole service, well almost. Andrew sat next to her and held her hand the whole time. That kept her quiet, but then daddy had to go to the restroom,
I was a seat over from her but kept touching her so she knew I was there.... But apparently that wasn't enough for her because in the middle
of service she screamed a scream only Lily knows how to do. So loud she stopped our pastor right in his sermon. He was talking about
writing our own songs in our lives and he recovered by saying just like that and then said that it was ok and smiled. I however sat there with
an extremely red face and couldn't stop laughing. When Andrew came back I told him what happened and for the rest of the service I just
giggled. Apparently in my attempt to quiet the child I put my hand over her mouth and realize that probably looked awful, but I didn't know
what else to do. At the end of the service our pastor made a point to find us and apologize for stumbling after she screamed. I thought that
was very sweet of him, considering we should have been the ones to apologize. He said Lily is welcome in service any day. The service was
standing room only and I'm sure there were well over 500 people in that service so we thought that was very sweet of him to go looking for
us. Everyone loves Lily even when she screams a blood curdling scream in the middle of a Christmas Eve service.
Christmas morning was perfect. Kids loved all their gifts, they were all so excited. Oli got some drums which has been interesting. Gradma
and grandpa N got an electric mototorcycle for him and he's been all over the place in that thing. He's been a crack up. Girls got cute clothes and other fun girl things. Lily mostly cares about pumpkin pie and Aunt Jenn's pineapple cake stuff that goes with ham though.
We went to my sisters this year since my parents have moved up north to Greer. My sister could put any cooking show celebrity to shame. She bakes and cooks amazingly and so it's always nice to be at her house. It was great to see my parents were able to come down for the day and we had a great time. Whenever my family gets together it seems like we end up with a popular quote of the day and yesterday was I was gonna get your gift but the store was closed. That was a true story from my sister to Andrew but then it started coming up whenever we wanted an excuse. Then after my mom gifted out scratcher tickets (they are convience store owners) :) my 14 year old niece sat there while scratching saying "I'm pretty sure this is illegal" which of course ended up being the quote of the day as well. But an awesome thing happened, my brother won $500 on his scratcher! He totally deserved it so it was an awesome thing to watch happen!
After my sisters we went to my aunts and celebrated with my moms brothers and sister, we ate, laughed and played a little LCR and I lost each time. No we really aren't gamblers but it sure sounds like it. Christmas was a great time! We had such an amazing day. I just love being with my hubby and kids on this special day. My extended family makes things even better, but being with my hubby and the 3 very special little people we brought into this world makes me feel really blessed. Also super thrilled with my ninja I got :)

Christmas in the air

2011-12-20T13:10:00.000-08:00

I wrote THIS (click this) many moons ago. I wrote it as a new mom of a very special baby girl. A mom who started coming to terms with the whole meaning of Christmas. Ok I grew up knowing the meaning of Christmas, but becoming a mom meant knowing the true meaning of Christmas and maybe more so the meaning of Christmas to Mary. I have always felt a kindred to Mary. She has always fascinated me. Maybe because from the age of 5 I have played her in plays. In Kindergarten I sat still and looked down at the baby doll while my classmates sang *gasp* Away in the Manger in public school nonetheless can you imagine the boldness of that school circa 1984! Also as a teen I played Mary in a dramatic modern version of a teenage girl trying to convince her fiance that she is pregnant and not by him. I mean that part gets glazed over a bit, but can you imagine? Now a days there are many words she'd been called not to mention crazy when she says who the father is, but back then you don't get called slut you get banished from your family, your community. This was a huge undertaking for this young girl to take on.
And I played Mary in a one woman act on Easter morning (several years ago)talking about seeing her baby boy, first born perfect son, beaten and hung upon a cross. So while I could never say I know how she feels, I can say I have spent some time channelling her trying to imagine her emotions. My favorite time is to imagine Mary though is her with her newborn baby boy. As a mom we all know there are no more precious life moments than your newborn upon your chest. Examining them for the first time after spending 9 months imagining them. And I can only imagine what Mary thought when she kissed her baby boys fingers and toes and realized that this tiny sleeping precious baby is not only her baby, but the son of God who will change our world for eternity.
I love Christmas. I love this week. The one that all the Christmas parties seem to cease and the time left is just us with our families. Baking cookies. Watching Elf, Christmas Story and Christmas Vacation. The time to wrap, construct, smile from within thinking of the smiles we will see on Christmas morning. I cannot wait to hear our little Oliver exclaim is sweet little "wow!" he exclaims whenever surprised with a little something. I can't wait to help Lily pull her goodies of her stocking and watch her get silly after some chocolate. And I can't wait to hear all the theories Andi will have when it comes to how Santa did it this year.
I wish you all a very blessed Christmas spent with your favorite people doing your favorite traditions!

Updates...

2011-12-12T12:25:00.000-08:00

Every year I say I won't do this to myself. I will be more organized. I will save and I will budget. I'm a freaking FPU graduate thank you. (GoodSearch it if you don't know what that is) But I didn't. Here I am 2 weeks before Christmas still scrambling. But I can pat myself on my back for not touching one credit card. NOT ONE! Christmas is much thinner this year, but my debt is also. This is so not where I planned on going with this post. I saw on my google dashboard that my last post of Nov 23rd. That was a long time ago in my blog world. Darn. But I am proud of my last post so at least it didn't sit in limbo on some dumb post about irritable bowels or something.
So let's play catch up... we ordered a sleep safe bed for Lily and put our boxing gloves on ready to fight, but they said we'd prefer you go with the easy care bed (which is pretty darn close to the sleep safe) and they'd approve that. What? Insurance improved our request on first attempt? Awesome news. Especially since the other night on prompting from strange lights on the infrared camera in Lily's dark room I found her face down in a pillow having a bad seizure. I immediately rolled her back and she gasped a large breath of air. I don't even want to talk about it. I didn't like that experience, I never want to have it again and I think God might have pulled some strings to get us this far safer bed sooner rather than later.
Lily had Ortho clinic last week checking her scoliosis and the AZ Cardinals were there! It was awesome! We're big Card fans, always have been, always will be! I had all three kids with me due to not being able to get Andi to school and Lily to the appointment on time, so what an awesome surprise. At one moment we had 3 cardinals, 2cheerleaders and the cardinal mascot in our room. Oh and a photographer. It was awesome! They were so sweet to Lily and thought Oliver was the cutest. Andi and Oli couldn't believe the Cardinal kissed my hand and Andi said she was going to tell her dad. On the way home Andi said "Mom the bird expressed his feelings towards you when he kissed your hand" oh she is some kid. Dr was kind as always, seemed a bit jealous of his stature compared to the football players, but got right to business. Scoli still there, and bracing may not be too far in the future. Surgery as well. One thing that caught me off guard was he asked her age twice then asked if I knew what stage she was in her disease, if she's plateaued. I told him we aren't aware of stages in her disorder, she isn't typical rett. I told him she never regressed because she never progressed. She's pretty much always been in a plateau. I was concerned with why he asked and he never followed up on that. My thoughts were he sees her getting older and sees her scoli.. and I don't know. People complain about getting older but they shouldn't. Be thankful for your years you are given. The more the luckier you are. I think when you have kids with severe special needs children the concerns get more as the kids get older. It sucks. That's all I have to say about that.
Thursday the 15th I am taking Lily to keto clinic and we are going to put her on modified atkins in an attempt to help the seizures. I am praying this helps because I know according to Neuro last step will be completing the corpus callosotomy. Her seizures are just so uncontrollable right now, even on 4 meds.
Lily started back up in hippo therapy (horse) but last time we went she had a seizure 5 minutes into it and that was it. We are gonna try again tomorrow. Weather willing. It's raining here. And a lot. So odd. So ridiculous in my opinion. TOM's are not good rain shoes.
Wow. Intended to come on and post about Christmas and my thoughts and yadayada but I guess sometimes when I let my brain take control there is nothing my hands can do but go along with it.
I've been going back and forth about setting my old blog up the one about nothing. There are things I'd like to say on here, but I feel like my feelings on motherhood and especially Lily need to be here, but certain other things that I feel the need to get out shouldn't be done here. I'll let you all know if I do so. That would require more time from me so probably not gonna happen. But maybe.
Do blogs without pretty pictures and crafts even still exist???

Thankfulness

2011-11-23T09:20:00.000-08:00

This is the time we remember what we are most thankful for. And I could give you a list as long as the world is wide. I am thankful for so much. From the shoes that cover my feet to the roof that doesn't leak that is over my head. Thankful for one clogged toilet because it isn't two. I am one who does her best to find the light in dark. It is how I am wired and it is one of the few things I like in myself.
Last night was a rough night. Lily had a seizure in PT, then fell asleep and slept hard for over an hour. She woke up just to have another seizure. Then she didn't want to eat and didn't go back to sleep very well. So when Andi Jane whom I always let pick a book for me to read from each night before bed asked for some odd reason to read from Lily's baby book, I was like really? "Really Andi this is what you want me to read" and she said "yes I want to learn more about Lily". OK so I read.
I start with the easy stuff, how mom and dad met, how my pregnancy was, then her birth. Then the stupid milestone page that was practically blank. I remember not being able to wait to write the dates of crawling, pulling up, walking, saying mama and dada. But those spots were blank. I trudged on. Reading about her first holiday being Halloween and she was hospitalized at that time. I read her dr. appointments that were supposed to be about well checks and ear infections, yet this was EEG, VEEG, MRI, Pet-Scan, etc. It was awful. Then the last page was where I wrote a letter to my one year old daughter. One who I still thought would still graduate from college and I quickly gave Andi a kiss good night and went into the kitchen and cried into my hands. I sobbed for what I had back then that I don't have anymore and that is hope. I hope this isn't taken wrong, I still have hope that there will be a cure, I still have hope that the future can change. But I am also not still hoping for a life that isn't going to be Lily's life. And it is sad to look back after 8 years of change and see what you thought it would be and it isn't.
And while this is all sad, admittedly sad, it's not hopeless. And I am not thankless for sucky things. Without Lily in our lives who knows where would I be. Who'd I be. What priorities would I set and where would my compassion levels be? I don't think I was ever not a compassionate person, nor an unloving person, or a person with ill set priorities, but I do think I am now a person of more. More love, more understanding, more heart and more passion. So I am thankful for those blank spots on that milestone page. As much as it sucks, I am thankful for them. Because it is those pages that has shaped our lives, our homes, our priorities and it is that precious girl who never has to fill in those blanks that I am most thankful for.
So hug your babies, hug your family. Be thankful for the people God placed in your life, in your family because there may be times you wonder why God set old Aunt Edna in your life and at the seat next to you, but maybe if you listen to what she has to say, even if it is after she tells you she doesn't like you hair style, she may have something powerful to say. Or maybe God just wants you to practice your patience.
Happy Thanksgiving. I know I have tons to be thankful for, I am sure you do to.
XOXO

Let's Shop!

2011-11-21T12:53:00.000-08:00

I am not sure if I made an offical announcement but now is a better of time than any.....
I am now a board member for the IFCR (International Foundation for CDKL5 research)!
I'm thrilled to be a part of these special woman doing something to make a change for the future of CDKL5. I won't push things on you in every post. You all know that is not my style. But I did want to let you all know we have a store that is currently selling hand-blown ornaments that are stunning! Each one is etched with either hope, love or cure cdkl5. It is a wonderful way to support our foundation and honestly they are beautiful ornaments!
We also have other fun items that show your support!
Anyway, just check it out :)

vvvvclickvvvvvv
CDKL5 Store

Viva Las Vegas

2011-11-18T10:09:00.000-08:00

Vegas came upon us fast and hard. It was one of those are we going or aren’t we going. Where are we staying, who is going? My beautiful niece, Ariel, turned 21 on November 10th and since her 18th birthday she has been saying “we are going to Vegas for my 21st right?!” Well it was sweet at 18, and 19 and even 20 but we all thought there is no way she is really going to want to spend her 21st Vegas birthday with her Mom, her aunt, her grandma and her uncle. There was just no way. Yet as the time got closer she got pushier and it came to the fact that she really wants us to go. Isn’t that so sweet? I mean I have to be honest here, those weren’t the top VIP invitees when I turned 21 a couple *cough* few *cough* err several years ago, ok over a freaking decade ago. But when push came to shove we were going to Vegas. My stomach was in knots, I didn’t really want to leave the kids. We don’t have money oozing out of us and we had a mini disaster of sorts happening at home. Hot water heater died, toilet was totally clogged and the disposal took a poop (thankfully not in the clogged toilet). We were coming off a not so great October. Ok a poopy October. We had a lot of sadness. Lost dear friends who after an emotionally draining situation decided to move back home to Oregon, Lily’s tonsillectomy I swear took years off of me. I tried to wean Lily of Banzel and she had the worst seizure days we had seen in a long time. It was just not a good month and I guess my heart wasn’t into viva Las Vegas. But since Grandma Cheryl bought plane tickets came down to watch the kids, which was so sweet of her, and Ariel wouldn’t take no for an answer we packed up and drove to Vegas. In one car we had Andrew, my sister and I coming from the Valley and in another car we had my mom, Ariel and her boyfriend who met up in Flagstaff. We all met up in the Bellagio lobby after a long drive and looked around at what had to be known as brideageddon. It was after all 11/11/11. I was tired, standing around watching the nuttiness of Vegas and thinking, I am not in the mood for this. It didn’t help that it was nearing 8pm and we had no dinner reservations and getting in anywhere wasn’t working too well. Eventually we ended up at an hour long line for a buffet to where you pay lots of money and still get treated poorly. It semi felt like you were guilty til proven innocent on paying and being sat, but its ok. We finally sat. We finally ate. Then we went looking for a place to sit and have our first drink. And then shall I say the night took on a whole new tone. We met up with a friend/ family member (married to the sister of our sister in law) who lives there and he got the drinks flowing. He was quite the tour guide and I’m not really sure all we did but I do know we didn’t get to bed until after 2am. 3am for us AZ folks. And Andrew did some planking on the streets of Vegas. He even planked next to Stitch. Yes Stitch from Lilo and Stitch. We woke up at a ripe 7am just giggling about the whole previous night, of course very quietly since we were sharing a room. Andrew and I decided to get breakfast and that is when the interesting things seem to start to happen. People are still up. From the night before! How do you have the stamina? I thought we were rock stars for making it til 2am. I saw girls falling all over each other. One couple walking with the guy pulling the girl by her hair (let’s just say not in an abusive way) I saw the walk of shame out of hotel rooms. We saw gamblers dressed in their best not even yawning. Not too many were in pj’s looking for breakfast, put it that way.
After we paid $50 ($50!) for buffet breakfast, by the way, I think if it is really “all you can eat” they should give you a hand stamp so you can come back. Otherwise you just have people like me throwing bagels, bananas and apples in their purses. Which came in handy to the homeless people, although the look on the woman’s face was like yeah I guess I’ll take your banana, I thought it looked tasty.
We go back to our room after 9am and figure Ariel and her boyfriend slept long enough. We woke them up. I wonder if that is the joy Oli and Andi get when they wake us up at 7am on a Saturday morning. Ariel and I head down for breakfast with the girls. (no I didn’t eat twice, just went for the company, but you can keep on judging me if you’d like ;) but what was to be a day with the girls went from breakfast at 9am to all of a sudden it was 7pm. Seriously how does that happen? I mean. We didn’t shop, really. We didn’t gamble, really. It was the oddest thing. We had so much fun. I guess when you’re up $17 on your mom’s $5 in penny slots; life is going your way. Don’t even ask how my husband was doing on the other side of town loosing on black jack with Tanner (Ariel’s boyfriend). It was a girl’s good day and a boy’s bad day. When we finally met back up, us girls giggly and tipsy we were met with a bit of the grumpies. Then changed and back out for dinner. But then mojo was gone. Done. We all yawned through dinner and made it all back to our rooms and were all fast asleep by 10pm. And by morning we were packed up and heading home.
I’d have to say the highlight was that day with my sister, mom and niece. We were all so relaxed and just enjoyed the day. My mom and sister are a bit more planned than my niece and I yet they just went with the flow. And we flowed all day all over town. We went to this bar called Minus 5 and it was all made of ice. It was freezing and so fun! I ate my cup made of ice. I mean how often can you eat the glass that held your martini? Who else could resist that?
When we finally made it home, that is a long drive, we were greeted by a Thanksgiving meal that was Andi and Grandma’s surprise for us, and lots of hugs and kisses. It was a great way to come back home and we were so glad to be there.
I do have to say though if I could do a little soap box business. Ladies, you do not need to show the world that you have a short skirt. Strangers should not be praying to God you are wearing underwear. Also we can tell your boobs are big, you don’t have to show them like that. A little to the imagination is sexy. The goal is sexy not slutty. I get it, its fun to dress up, it’s Vegas after all. But when your skirt is an inch from your hiney and you are tugging on it all night long, you know that isn’t sexy. Any girl can find a guy, but it is quality that matters and fishing for a man in that outfit will get you noting but crabs. I meant that figuratively, but it could go literally as well. And getting that drunk is not safe. Not when you two girls are all you got, if you are both falling over each other on a bridge and a strange homeless kid is trying to “help” you, that is not safe. You have to work together, protect each other. Mom types like us can’t stop you and make sure you are not making a mistake walking with this strange guy taking you back to his hotel room. So yes its Vegas, dress sexy not trashy, get tipsy, not wasted (unless you have a safe friend) and enjoy your time. Don’t take home anything besides some corny souvenirs and a designer handbag.
Ok done, had fun, glad we went, but more so glad to be home!

Planking by Stitch

Family Fall Photos

2011-11-16T07:47:00.000-08:00

I can't brag about my friend LIZ enough! We showed up with a sleepy Lily and well a 2 year old Oli. It was about 90 that day yet I made us pretend it was in the 70's and we left the session thinking no way we got anything! But in true Lizzy fashion she surprised me with some stunners! Now there aren't a ton, but the ones we got are priceless.

Love this one!

Working with (not against) a sleepy Lily

LOVE!

Reflections

2011-11-05T07:26:00.000-07:00

I heard a quote in a book that made me stop and go back and play it again. I listen to books on my ipod on my way to and from work. Now I have been told that listening to books is “cheating” or that “it doesn’t count” and both those comments drive me nuts. I listen to books for pleasure. I am not in school. I have no extra credit due. So who am I cheating? What doesn’t it count for? It’s not like watching a movie and doing a book report on it. As an adult who enjoys listening to books because I have far more alone time in my car than ever in my home, for me yes it counts, and no it is not cheating.
Ok now I can continue, awhile back I was listening to a book called Winter Garden by Kristin Hannah, it was a beautiful novel that took real history from WWII and put it into a fiction about a family with a mother who experienced life in the Soviet Union when they were invaded by Germany. The book gets dark at times, because well it should; it was depicting times that most of us could never fathom. The line that came to me was “none of the mothers looked at each other, it hurts too much to see your own pain reflected in another woman’s eyes” and that was the line I needed to listen to again. And again. Maybe nothing too profound to everyone, but it hit me hard. I have been a special needs mom for over 9 years now. We never got that period of time where we thought our life was normal. Ok maybe those 3 weeks before her first seizure, but there was something not “right” in Lily’s eyes from birth so really we’ve never had a moment that everything is perfect with our daughter. In the beginning we had good attitudes. At least on the outside. We’d smile. We’d deal with each seizure each time of each day; tell people it’s our lot, it’s our blessing. Yet on the inside we crumbled when each disappointment hit. I went to a support group yet rarely did I share my heart. Did I let my tears show, let me just say the difference between me at 23 and at 33…. A lot more tears. I used to be afraid to show them, so I showed an exterior of smiles and bliss and complete acceptance, yet on the inside I didn’t feel that. I wanted my baby to be “typical” I wanted to her talk to me. I wanted her seizures to just go away.
One day I remember watching a video someone showed online to ask if it was a seizure or not and the minute I watched another child have a seizure that was not my own child my stomach felt like I had drank curdled milk, I wanted to vomit and I closed the video. I wanted to be a support for that mom, but I couldn’t do it.
Another instance was watching Extreme Home Makeover and there was a family with a severely disabled boy with epilepsy and I was watching the mom talk about how hard it is to care for her son as he gets older and I just sobbed watching this woman’s story. I sobbed as I watched me from the outside. I was overwhelmed with pain for her, yet looking back I know it was pain for me. Pain I never felt I was allowed to show, I could feel for this woman.
And much more recently last year when I went to Nashville to get away from my mess of a life, a marriage barely hanging on, I had to get away and Nashville was the place to go. My good friend Wendy lives there with her amazing family, her oldest daughter is the same age as Lily, we met online talking about how much seizures suck. Well on that trip Langan had a bad seizure, a long seizure that Lily used to have but it’s been years since I have seen them like that. Here I was feeling so proud and maybe a little jealous at how well Langan walks and gets around and feeds herself, but seeing her have that seizure and watching Wendy stroke her hair and comfort Langan telling her she was ok, I just couldn’t watch it. I went to go find her a hair brush. Yes me in my take action skills, getting a hair brush. I probably looked like Vern on Stand by Me. That is all you brought, a hair brush? Vern you don’t even have any hair! I brought it for you guys.
Sorry if that makes no sense to some/all of you.
But it was another instant that I couldn’t bare to watch.
In my life I can deal with a lot. A lot. But I simply cannot watch it play in front of me on anyone else’s face. When we lost Emmie last year, I was devastated beyond devastated. I think it was the worst death I had ever been around, yet I wasn’t a part of the family. It was a strange feeling because I felt I didn’t deserve to hurt so much over someone else’s loss. But watching her parents, dear friends of ours, live this hell was so hard. I wanted to take that hurt away from them. I wanted to make a world that small coffins aren’t ever made because there is no need, but because I can’t do that I just wanted to look away. It hurts too much.
“None of the mothers looked at each other; it hurts too much to see your own pain reflected in another woman’s eyes”.
I sit here starting at my screen drinking my coffee and ignoring the fact that even though I woke up at 6:30am on a Saturday just so I could spend some quality time with a word doc I already hear Oli yelling that he wants out of his crib. The same crib he knows how to climb out of, but he doesn’t until I say he can, I love that fact. You think it went like that with Andi Jane? Oh heck no.
So I digress, I look at my screen asking myself, what are you going to say next Kim? You have to pick this up. Find the positive, end it where you typically do. Where is the humor? But I have nothing. That quote mixed with my life experiences is all I got. It should go on my gravestone because no truer words have been spoken to me. My truth read in a book. No the book wasn’t talking about seizures and wheelchairs, it was putting children on a bus away from their parents sending them away to be “safe” during WWII. But it’s all the same. When you see your hurt played out in another’s eyes. Especially in another mother’s eyes, it breaks you.
So if we are experiencing a similar pain don’t be surprised if I say a lot of jokes, I skate around the issue and do my best to never discuss it. If we do, don’t expect a lot of eye contact. It just hurts too much.

Tiiiimmmeeee is not on my side....

2011-10-27T15:02:00.000-07:00

I suck at posting lately. Total suckage.
We had a heck of a time with Lily getting over that surgery. It was awful. 2 full weeks of pain and an entire week to get her to poop. It was exhausting for all parties involved. Lots of crying. For all parties involved.
She is basically back in action, yet we put her on Zonegran about 6 weeks ago and she is finally on full dose and the poor kids appetite is cashed. Like maybe some pudding and applesauce. If it weren't for carnation instant breakfast and pedisure I don't think she would have survived. She had to have lost at least 5 lbs and on a tiny frame already that is too much. Get this, she is again wearing the size 8's handed down to Andi Jane and Andi Jane is wearing Lily's 10's. What is going on here? I don't like this reversal. It was hard enough watching Andi Jane walk and talk by the age of 1 when Lily at 3 at the time still couldn't do either. It was hard when Andi totally surpassed Lily's shoe size and now clothes. I'm sure it happens with typical sisters, I'm what 3" taller than my "big" sister and always have been a size or two bigger so I know it happens, but it still reminds me that nothing is normal here. Sometimes it's nice to just pretend in my head our family is typical, forgetting seizures, and wheelchairs of course, but now Andi Jane is just full on growing bigger and 2 years younger. I just don't like it. I remember as a kid wishing on every birthday cake for my brother to be "typical" or to walk and talk like us and every year it didn't happen. I just worry that I am still doing that to this day just over my kid. My child whom I accept fully as she is, but sometimes that yearning for "normal" is overpowering even to a wise woman who understands her lot in life. Although I do understand come teenage years I may be grateful for just one typical girl ;)
Things are crazy, every day we have something else going on. Halloween is coming up then of course the holidays so I'm fairly certain time will become more and more of a luxury.
Speaking of Halloween I have yet to figure Lily out and Andrew and I will be attending an adult party (we haven't done one since before Lily) on Saturday and we haven't a clue as what to be. Tonight is date night supposed to be getting costumes, yet he said we're attending an HOA meeting instead. My knight in shinning armor.
I have so much to share but they all deserve a post of their own not just a jambalaya of words and thoughts (now I'm hungry) so I am going to challenge myself to remember myself and my passion and get back to what I love doing. I deserve some writing time.
Promise to try harder....

WWPD?

2011-10-17T11:48:00.000-07:00

WWYD? WWJD? WWPD? The last one is what would Phil do. Phil, you know, Phil. Phil from Modern Family. Phil. We all love Phil and some of us, maybe those of us who have watched the show from the day it premiered, the day you anxiously awaited after seeing the commercial for the show showing Cam and Mitch on an airplane and someone said look at the cream puff and Cam yelled about that being offensive and then looked at baby Lily with a cream puff. Oh the show that tops all the other comedies. Modern Family. I heart the entire cast. I want to marry Cam, if he'd have me. I love that show. Ok back to Phil moments. If you love the show like we do, you yourself have had those moments and laugh. Or cringe. I recently had one of those moments.
With Lily's surgery and fall break I've had no dates with my husband, no breaks with my friends. If I am at work it is with Lily. Like I go potty and stare at a dog and two kids. No breaks.
So we find out some amazing news that a good friend of ours doesn't have cancer after a lot of testing. It was hold your breath waiting then when she said she was all clear it was time to celebrate! Our plan was to go to a bar just a mile or two from home, my friend Kim picked me up and it was time to celebrate! Kim shows up and I am not ready of course. She waits for me, then I kiss my family goodbye and get ready to have a drink or two or five. Just kidding. Just a few. So we are on the road our typical banter of what's going on, I get a text and I start responding, when I look up I see two cars collide. I don't think we even said a word, Kim just pulled over and I grabbed my phone. I dial 911 and start telling them about the accident. Kim takes off to the car where there is a young teenager jumping up and down in a panic because her mom is pinned in the car and it has caught on fire. I am telling the 911 operator to hurry up, the car is on fire! She is screaming! The lady was screaming! Kim is trying to get this lady out of the car, passerby's are throwing milk, juice, soda on the fire, someone had a fire extinguisher that hardly did anything. And I stood there on the phone to 911. I look over at Kim hugging this frightened young girl. I see Kim checking on the passenger in the other car. I see her across the way talking to others. I was on the phone with 911 still. Finally fire truck comes and gets out the fire. We don't think the woman was burned but her legs were crushed and it took an hour for them to cut her out of the car. The police officer comes over to me and asks me what happened. I said the car came out of nowhere. I don't know what happened. I tried to tell him then I say I was texting go find my friend Kim, she was the one driving. He goes and finds her and talks to her and comes back to me to say "you were right, your friend was a much better witness". "Yup" I told him, then proceeded to tell him this is really taking away from our girls night and he sounded like he wanted to be invited. Silly officer. When I finally got reunited with Kim I hugged her and told her how proud I was of her and how much I loved her. She was a freaking hero and I just called 911. And yes this was awful and scary and how am I relating this to a Phil moment? I don't know, I just think Phil would picture himself a hero in situations. I know I thought I would have acted faster. The car was on fire. My instinct was not to run into a burning car. I would have loved to have been a hero but I stood there not knowing what to do with my hands. It was a Phil moment. Or maybe a Mitchell moment. But whose ever moment it was, it was really mine and it was just funny, later, and not at all for the scary accident and the poor woman with crushed legs and her poor daughter who saw something really freaky, but for me it was like... c'mon Kim that's all you got? A cell phone?

Still recovering

2011-10-10T14:41:00.000-07:00

Well I post Lily's recovery on Saturday to have her wake up on Sunday with a 102.5 fever and her just miserable. The on call Dr (yes you better believe I called him when he was on the golf course) said that is was normal and they get worse before better. Well he wasn't kidding! Last week was worse than the first week. She took the tylenol with codeine every 4 hours until this past Saturday and even then she took it am and pm. The fever lasted until Monday and she had to go to work with me Monday, Tuesday and Friday (the girls are on fall break for 2 weeks). She still hardly eats and has lost a ton of weight off her tiny enough already frame. She is incredibly constipated right now and even with enemas and miralax we aren't getting anywhere. If she doesn't explode soon we will be at the dr. She screams every once in a while and I know from Andi's experience the cramps that come and go are excruciating. :(
She is at work with me right now watching netflixs being a sweet but uncomfortable girl.
So glad I have the next two days off. I love working, but when the kids are out of school it is more work getting to work than actual work.
Sigh. So pray for poop. We are hoping to get away this weekend by visiting my niece Ariel in Flagstaff (she attends NAU). We are excited for a little getaway as long as Lily's bowels comply.

Recovering

2011-09-30T19:38:00.000-07:00

Lily's surgery was 10am on Tuesday morning. The surgery was the quickest one she has ever had and we were back in recovery in no time just watching her beautiful face sleep. She always takes a long time to wake up after anesthesia so we knew it would take her nearly an hour before she woke up and we were right. What we didn't expect was the 4 hour wait in recovery for a room. The room was about 50 degrees, no joke and we were starving. We never sat that long before in recovery. When Lily finally woke up she was pretty peaceful at first, then she started to cry, they put pain meds in her IV and she went back to sleep. Most those 4 hours were Lily sleeping, Andrew and I saying we were freezing, saying we were hungry and passing Lily's iPad back and forth playing some dumb animal pet shop game of Andi's that goes so fast you about have a heart attack trying to avoid unhappy customers. Perfect game for life's biggest people pleaser. Oh no, not an unhappy FAKE customer.

We got to our room around 4pm. Yes, I said 4pm..... and our nurse was a nurse that used to come fill in years ago as our home health care nurse. It was so good to see a familiar face and I knew we were in great hands. The hospital had built a whole new tower and Lily was the second patient in this room. It was quite beautiful for a hospital and although it wasn't exactly a staycation, it didn't feel like prison either. The nurses were all incredible and I will say it again, pediatric nurses are like no others. They have hearts bigger than the body that stores them and I am grateful to Phoenix Children's Hospital for staffing the best!

Lily was up off and on and was drinking and ate some but when I asked for pain meds I didn't realize we couldn't do it through the iv anymore and it didn't go well. Lily spit it out everywhere and we had a difficult night that night. In the AM she was drinking enough and wetting enough to go home and we were home by 10am. I got her meds at our pharmacy (Target, where every time I go there with Oli just to shop he points to the pharmacy and says "LolyNanna!" that's sad) and asked them to flavor the pain med as much as they could and it has helped some. I also have to be a big jerk and plug her nose and blow in her face to make her swallow. It's awful :( but when I let her go longer than 5 hours she is so sad it is too much to bear so I choose being a jerk over watching her suffer.

Yesterday wasn't so bad she drank pedisures all day long, ate applesauce, pudding, naked juice, and yogurts and she seemed to be in a decent mood.

Wednesday Andrew had to head up north to work on a house and I scheduled the surgery fully aware of him going out of town, so I had Lily's new caregiver come Thursday so I could take Andi to gymnastics and had her come today so I could get some errands ran. Plus I think Lily wanted me to leave with her brother and sister. They are so loud.

So loud.

Today Lily woke up with some really dark circles all around her eyes. They almost look bruised. She has been a lot more mellow today and while she's been sleepy anyway, even more so it has seemed. This AM I got a call from my friend Nancy who said go online to Texas Roadhouse and look at their menu and let her know the order for our family and she'll bring it over for dinner! Her hubby is the head honcho at the one by us and that place is yummy! It was such a blessing since Andrew is gone to have dinner brought to us. Nancy, who watches Oliver 2 days a week, knows that Lily lives and breathes for a loaded sweet potato from there and that is what she brought her. I was excited to have Lily eat with us tonight because she hasn't since Monday, but when I put her in her chair and gave her a drink she just started crying, and this is the saddest cry she has ever cried. I put her back on the floor, gave her another dose of pain meds, it had only been 4 hours, I wanted her to go longer, but apparently she still needs it around the clock. After 30 minutes I sat her up and she ate the whole darn thing! But while we were waiting for the meds to kick in I was eating with the other two, but Andi said she'd rather lay down with Lily than eat. So I ate with Oliver while the girls held hands and listened to Jewel Twinkle Twinkle. It was the most precious moment. I just love the love that is shared between these two girls. I often will get bogged down thinking what their relationship *could* be, but then I see moments like this and it takes my breath away and I know their relationship is exactly as it *should* be.

Daddy comes home tomorrow and I'm really looking forward to having him back. He has been very missed. Very. Thank goodness for Skype! I'm like a walking ad this blog.... it's a real shock with my quality of writing I am not sponsored.

So from what I heard we should plan on the next several days to be more of the same. All in all she is being an incredible trooper. I know I would be crying in my room demanding silence. I would never get it, but I would certainly complain louder than my sweet girl.

The other two are down for the count and it's only 8:30pm! It's time for Lily's night dose and for my dose of wine (barefoot riesling cheapest one at target cha-ching ;))

What did the one tonsil say to the other tonsil?

2011-09-26T11:00:00.000-07:00

This was one of my most favorite jokes to tell as a kid. What did one tonsil say to the other tonsil? Hurry the Dr. is taking us out tonight. Insert laugh.
You have to insert it because I can't do it myself. Ugh. Thursday I miss a call at 4:30pm to schedule Lily's surgery, I listen to the voicemail write down the number and call her back only to get her voice mail that she left for the day. So did you leave my message and just run out of the building like it was on fire? How did she go from there to schedule to gone... things we may never know.
Anyway, I call her Friday am and I tell her we have a whopping 2 1/2 weeks off for fall break and how lovely it would be to schedule during that time, she puts me on hold and says there is no way the Dr can do it then, I'm thinking great they won't do this until November when Lily is in the middle of one of her common fall/winter long colds... but no she says can you do Tues the 27th? Gulp.. yes. I guess. Ugh. It is here so quick :( I'm just in knots. I know of 4 people 2 adults and 2 kids who have had them done fairly recently the 2 kids were very recent and I'm scared for Lily. I hate to see her uncomfortable and from what I understand it can be very uncomfortable. I know to keep her up with the meds and that helps a lot. But still, sucks.
I know it needs to happen though. Our family all stayed in a (I'm struggling here with a or an, an is phonetically correct just sounds wrong, I will leave it as a and let you all either correct me or just judge me on my poor grammar) one room hotel room this weekend to go to a wedding and that poor girl wakes us all.night.long. I pray that this will improve her sleep some. I pray that it is mostly from the tonsils and adenoids and not all neurological. I pray she handles this like the trooper she is and she is in wonderful hands. We will be staying in the PICU Tuesday night and will hopefully be home by Wednesday. It's such a juggle with 2 other kids. Andi has half day on Wed and Thursday and I really hope I am able to swing the parent teacher conferences for both girls on Wednesday, but we have it all figured out and we should survive. Just like with everything else. My sweet girl has to yet again go under anesthesia as well as undergo another uncomfortable recovery.
I will hopefully have wifi at PCH and be able to update every one.
Keep her in your prayers please.

Updating

2011-09-16T10:38:00.000-07:00

Time for another update on Lily. Still no surgery scheduled. Just because she had that whole heart thing and had the holter monitor now they need clearance (Clarence, Roger Roger - sorry that Airplane quote always gets me when I least expect it) from Cardio. Geeze so thorough... I'm being facetious, I appreciate the whole wanting to make sure her heart can handle surgery.
I wonder why they don't want to check mine. I am fairly certain hers can handle it better than her moms.
Anyway, so no news there. My friend Kim said I should schedule it for months out just so when it actually happens months away I won't be annoyed, it will be ontime. Spoken like someone who knows the fun of dealing with lots and lots of Doctors.
We went to see again our new neuro, but I think this one will stick. She was very smart (duh), kind, gentle and beautiful. Not really want you expect from a neuro/epileptologist. She wanted a plan, not just a short term plan, but a long term plan as well. We are trying Zonegran again, it's been years since we tried it. We will also be putting Lily on the modified Atkins diet which is not as extreme as Keto, but a lot of times just as beneficial. I am starting that after her tonsils are removed obviously. Maybe not obviously for everyone, but when you get your tonsils out you eat lots of popsicles, ice cream, ie cold sugar. Not really so much items from a high protein diet. So there, now you know obviously.
If in a few months if the Zonegran and diet are not stopping the tonic, tonic clonics and drops then she wants us to seriously consider going ahead with the full callosotomy.
Quick back up when Lily was 2.5 yrs she had brain surgery, a corpus callosotomy, but they only split her about 1/4-1/2. They are essentially stopping the right side from "talking" to the left. Like a serious break up. They typically just do half in hopes that is all they need to do, but sometimes especially in kids with LGS (lennox gastaut syndrome) they do better with the full callosotomy. I am very anti this. I guess basically because it requires cutting my babies brain in half literally. I came in with guns blazing ready for this option to be brought up yet again, what I didn't expect was for my husband to put my guns down and ask real questions that made me consider. And just consider the option. Andrew hates the amount of meds she is one. As do I, of course, but he is looking at the long term effects more than I do I guess. The surgery done properly will not change anything about Lily. My biggest concern. They won't be removing anything so she would still be Lily. Prior to the first surgery Lily had 6 tonic clonics a day making the surgery our only logical step, but she isn't that bad now so it is hard to say yes to this next step, but considering how much less her seizures are with the 1/2 maybe the full would eliminate those seizures and she wouldn't need to be on that many meds anymore. I always thought it was the Vigabitrine that stopped her tonic clonics, but maybe it was the surgery. I don't know. The surgery doesn't help immediately right away so when she came out of surgery seizing that wasn't a huge disappointment, let me clarify IN THE MEDICAL WORLD, to me it was the biggest sucker punch life had ever dealt me, but maybe knowing more ... maybe asking more questions....maybe more research. Maybe, just maybe, just just maybe, it could be in our future. BUT what I am praying for is that that getting her tonsils out with improve her sleep and her seizures will be better after good sleep and then the diet will help as well and we will see enough improvement to get her down to one maybe two meds. So friends I ask you all as well to say that prayer for Lily, but I also know God is in control and if the surgery will be what puts Lily's brain at rest then I pray that option will be made very clear. What I have been explained over and over again the tonics and tonic clonics are the seizures that most often take lives and I am not going to let seizures win. I will not. We have fought seizures for 9 years starting Sept 21 to be exact and we won't quit. Nope not ever.
So please continue to keep Lily in your prayers. I know many of you have since the beginning and I know God has held our hands through each step, even on those days I let go of his hands, and on those days I pushed him away, and on those days I clung to him. He never left our side. I know he won't and have full comfort in knowing he will see us though.
So that is my update for now. Work smerk... just kidding Dad. I am back to work! Yup... just working away...

Convert your blessings

2011-09-14T08:32:00.000-07:00

We go to a pretty awesome church. Like the most awesome. Just this past Sunday we came to church knowing that we will leave barefoot. This was our 3rd Sept doing this. We did have fair warning and came to church with our shoes on, plus a bag full of others, and we left them back with about 3000 other pairs that will be hand delivered in Africa by a group of people hopefully including my hubby.
This service is called Barefoot Sunday and it is as inspiring as a church service can be. We learned what Jesus was all about when he walked this earth and what he did for others. We were challenged to convert our blessings upon others. People that some may see as invisible (or rather people that exist that some never see). People that many ignore. People that may not be like us. We heard a quote by Bono that ended like this "God is with us, if we are with them". What a time to look into our own selves. Look into our own selfishness, time for us to walk barefoot and feel what the hot ground feels like on unprotected feet. Our family went to Chipolte for lunch after that service and we were all barefoot. All we did was hop from the hot surface to the hot sidewalk to the cold a/c filled restaurant then the same scenario back to the car and home. It was hot, our feet burned and we experienced that for a few minutes. How many generations live their lifetime never with shoes on their feet?
I felt so inspired to do more. I give my blood every 2 months. We serve in our church nursery, but I want to give more. Get out of my comfort zone and do more! We signed up for Live Love next Saturday where we will go into a local neighborhood that needs some caring on and I signed up to build in Mexico in November, I will be sleeping in a tent. That, if you know me, is enough out of my comfort zone. I HATE sleeping in tents and sleeping bags. Ugh. But see that is why I need to do more. The old me would be far more concerned with Missoni being at Target, this new girl only looked online at those beautiful clothes.....sigh...so beautiful. You know I fell in love with Missoni when a stylist brought it to a editorial shoot I was modeling in when I was 15 years old. I though one day I will own a piece from that line. But 17 years later I still don't. But I know that my life will go on even if I never do get a piece. But it would be fun and maybe when we are on baby step 4 I will get a piece, thanks for totally changing my whole perspective on life Dave Ramsey... wow squirrel moment.
Annnnd we're back. I want to do more. Give more. I am a blessed woman who has a husband, 3 beautiful kids, a home, air conditioning, food in our fridge, even a swimming pool, we are blessed people and there are so many out there who are not. My thinking has changed, I've slowly been changing, but I feel like I recently took a giant barefoot leap and look forward to seeing what other changes are about to come to this family.
My space bar isn't working well, neither is my e, the x is missing and the ; is like a loose those just hanging there, I am telling you that b/c my writing doesn't feel very fluid and for that I blame a 2 year old.

You probably think that you're cooler than me

2011-09-09T10:19:00.000-07:00

Andi Jane has been bugging me to sign her up for gymnastics. I had been stalling since she like most politician she is a flipper. One day it's basketball, the next is synchronized swimming. I wanted to make sure I was not better off flushing money down the toilet, but she was persistent and her coming home like a bucking bronco, "playing" which quickly turns into fighting with her brother was enough to let me know a little organized exercise might not be such a bad idea. So I had her signed up for a trial class at a gym about 8 min from our house. Yes 8, more than 5, less than 10. On the drive there we have to go through this road where there is a little airport and a bunch of hangars. All around the area is fields and a dairy farm. Andi Jane starts explaining me rural areas as opposed to city. I said that this all seems pretty rural to me and she was telling me that I was wrong. And then she said, "mom I just rolled my eyes at you", not smart enough to not tell me that vital information yet I decided to change tactic with her. She thinks she is cooler than me. She is 6 and thinks she is cooler than me. So I say "see those hangars? That is where airplanes park, one time I was in a commercial and we shot the whole thing in a big hangar in Tucson and it was freezing in there!" "You were in a commercial?!" she asks wide eyed totally listening to me, "yes but it only aired in Japan" I answered, "You went to Japan!?!?" she asked again eyes filled with wonder, "No we just shot the commercial here and they aired it in Japan" I answered thinking, ha your mom is cool little Missy and then she says a disappointed "oh". Oh so my commercial that only aired in Japan that was shot in a freezing hangar in Tucson all of a sudden was of no interest at all. yeah she just might be cooler than me.

Silly Boy

2011-09-06T09:44:00.000-07:00

So there is this Family Guy clip that I have seen since Andi Jane was in this phase, you know the mom, mom, mama, mommy, mom, mom, mama, mommy, MOMMY, MOMMY, MAMA ......
So we showed Oli this clip and he LOVES it and likes to mock it.
Here he is. It is dark, sorry, but all you really need is sound.

Quick Update

2011-09-02T13:42:00.001-07:00

I just wanted to quickly update from Lily's ENT appointment. He was very nice, on time and cute with Oliver as well as spoke to Lily not just me. Those are all major pluses when dealing with a Dr. He looked at her sleep study and said she had 10 apnea spells and hour and when I said "wow" he said that was moderate. Yikes, glad she isn't severe.
Half the time there is obstruction and that is why he agrees the tonsils and adenoids should come out. He said it won't help her completely, but it will help and she may sleep better.
I have been praying that we will be told what we need to do for Lily so I am going with this as it is supposed to be. But I am not gonna lie, I do not want to put her through this. Breaks my heart.
I have been around 3 people who have had those taken out in the past years and they all said it hurts. Hurts bad.
As a strep throat every year kind of gal (3x in 2010) I know that a sore throat can bring you to a crying little girl. It was me last year, just wanting death to take me away. The only comfort is I know she will get good meds and we will have to keep it up every 4 hours and maybe that way if we are proactive, she will not be too miserable. But with no caregivers right now and not even a sight of one in the near future, I am a little worried about taking good care of her and not letting the crazy other two make things too hectic for Lily bug. I was thinking we should do it during fall break but then thought her home all week long with her brother and sister all house bound? Maybe not such a great idea. They should be calling to schedule so we will get that done and plan accordingly. She will stay one night in the hospital if all goes well, so that is actually a good thing. I feel better having help from nurses after things like that.
Pray for Lily and her mama's heart as we get ready for yet another surgery.
2012.... please tell me you have a rainbow with a bag of pedicures and facials at the end of it. Please.

So Much to Say!

2011-08-29T10:14:00.000-07:00

Lily's birthday was really nice! They sang to her in her Sunday School class and we had a party at Peter Piper Pizza for a few of her friends and family. It might have been a little too over stimulating and she had 2 seizures. Poor kid. But she did enjoy her day.
So much to back up and update everyone one. When we took Lily to the new neuro he wrote her a rx for Depakote, it's a recycled med but from 2002, I didn't want to try a new med on vacation so we started 2 weeks ago and was going up slowly. Then the screaming started. Happy/mad screaming and lots and lots of crying. Not eating. I understand changes happen on meds so we were pushing through but by this Saturday she was just screaming and still seizing and Andrew and I made the decision to pull her off. If she is going to have seizures she isn't going to be taking a medication that makes her miserable on top. Maybe we should have stuck it through, but honestly my gut rules now and that's that. I'm honestly contemplating keto again, but I hate feeding Lily foods that aren't fun for her. When you have such few pleasures in life and you take it away, that just seems unfair. Seizures are unfair.
Last week we finally got into to see the Pulminologist which was a a whole lot to do about nothing. She reviewed her sleep study and said she had seizures, apnea due to neurological issues and apnea because of obstruction and now we need to see an ENT about getting her tonsils and adenoids out (I have such a hard time with that word, I want to call it android, random police gonna take me away). Anyway we have that appointment on Thursday. Pulminologist said if she can sleep better (which right now her sleeping is off the hook awful) by getting rid of the obstructions her seizure threshold may be higher and she may have less seizures. Now this isn't our first rodeo, I am not thinking for one second a cure will come as a result of loosing a few body parts, but it does make sense that is may help. The child is the worst sleeper ever so maybe, just maybe a full nights sleep would make a world of difference. And of course if this doesn't work then we move to C-Pap machine (ha). (HAHAHAHAHA) Right. The child with more sensory issues than teeth. HA.
I will update after that on Thursday.
I also wanted to update on Andi Jane also. We tried a medication for ADHD and it was awful. She was grumpy, falling asleep all the time, it was like she is PMSing all the time. I took her off the medication and called the Dr. and said I think we are going to try this thing naturally. And we have been and it is going pretty good. She has her moments yes, but she is in a class with a teacher that is really working with her and it is making an enormous difference, she is also working on control at home. She will always be a highly energetic child, she will probably always struggle with controlling herself, but at least she now understands and can work on it. I took her to a birthday party on Saturday and she said "Mom, Sarah asked me to stop hugging her so I did!" Yes small victory, but a child that has no respect for personal space, that was a huge accomplishment. I said "I'm glad you were able to tell Andi that you needed space, Sarah and Andi I am proud that you respect Sarah, good communication you two!" and they looked at me like I had a pot of flowers on my head.
We got back from our trip on a Friday and Andi was complaining about her tummy quite a bit off and on, but kids with tummy issues, you never know if it is nerves she missed a whole week of school and was coming back. Or we were on vacation eating different foods and on a different schedule. Saturday I was heading up north for a wedding shower and Andi wanted to come, but then she was doubled over and just feeling awful. I got her kids pepto but it would just come and go and she would be in some major pain. Finally by Sunday night she was miserable. Yes I waited til Sunday night. I said to her ok Andi if we go to Urgent Care they may draw your blood and it may hurt, she said I don't care I need a doctor and that was it, we went. Long story short X-Ray showed the poor child totally backed up, I mean almost to her stomach. It was so sad. Dr. said that really hurts. Poor kid. We had to clean her out. No need for details, but it was so sad to me. We spend so much time worrying about Lily and her poops, you just don't even think about your 6 year old. But it is fun being able to tell Andi she is full of poop and mean it.
Oliver is good. He is talking more, not too clearly, but he sure talks a lot. He says crunk using his dutch and german roots with the beginning sound, still wondering and waiting to see if he needs to get into speech therapy. He pooped and peed on the potty all day Wed and Thursday when I stayed home with him, he was pretty excited with himself. This was all on his own accord by the way. He also uses the doggy door and pee's outside. If that says anything.
So these are all the things I wanted to update you all on and just never find the time to do so. So much going on so little time.
You know 3 kids really changes things, I didn't think so in the beginning, I am noticing it much more now. I'm not complaining, just so so busy.

She is turning 9

2011-08-27T09:17:00.000-07:00

There is so much I can say, so much to be sad about and so much to be happy about. Loving Lily for the past 9 years has stimulated growth in everyone who knows her and loves her. She is one amazing little girl or... wait is she a tween now? OMG no way. She is a little girl. Our sweet little girl that gives us so much to be thankful for.
Happy Birthday LilyAnna Blu! We love you!

We're Back

2011-08-17T10:07:00.001-07:00

I’ve been wanting to update after our week away, but we have not slowed down one bit yet. But I have some time, Calliou is entertaining Oli and the girls are in school so finally here I go.
3 words to describe the past week is Blessed, Overwhelmed and fabulouslyfun (my blog, my rules).
Blessed by wonderful people with big hearts! Our vacation started by getting to the airport at 5:30am with 3 kids. My niece, Ariel, met us there and there was no parking, had to go into overflow lot, had to take shuttle with wheelchair lift, ie we were getting late and I was getting stressed. But let me just say Allegiant Air at Mesa Gateway had a gentleman by the name of Eugene aka Gene that might as well have worked at the Beast’s Castle, he did everything short of singing “Be our Guest” to get us on that airplane. He was incredible and kind and just plain sweet. Him, plus Ariel and Andrew taking our luggage with him made this trip smooth sailing. We were in Rapid City by 10:20am and all in great moods. Not common for me and traveling with kids. When we got off the plane I was thrilled to see my hubby, father in law and Ariel’s boyfriend, Tanner, standing there waiting for us and excited to get our vacation started. We went to Mystic Hills and said our hello’s to grandma Cheryl and the kids just let loose. I have to say if you are ever wanting to vacation out near Mt. Rushmore you have to stay at Mystic Hills. We all hadn’t been there since May of 2006 and it was so great to be back! They have RV spots to rent, places to tent and cabins to stay in. They also have a restaurant/bar that serves good food. It really is a great place, can’t say enough about it. The kids loved it there. So much fresh air, it was cool there, they have a huge lake with ducks to feed and even a cute little paddle boat. Since it was Sturgis Rally time they were really filled up and so a wonderful local family, Curt and Denette, offered for them to sleep in their toy hauler while letting us stays in their beautiful 5 bedroom house! What a blessing! There were 7 of us and we all had our beds/rooms to sleep in. Lily got to sleep in a comfortable futon and Andi wanted to sleep with her. We got to see our good friends Dave and Erin who moved back to South Dakota from Arizona and got to meet their newest addition to their family.
Monday Andrew, Tanner, Ariel, Oli and I ventured into Sturgis during the day, Lily and Andi Jane stayed back with grandma Cheryl and I am so glad they did. All I could think was I had too much clothes on and why do people have their kids here… oops I did, but at least he is 2 and will never remember all those painted naked bodies. It was quite an adventure! It was fun to see though for sure, all those bikes! It was pretty surreal. But I was glad we were staying 20 miles away at Grandma and Grandpa’s place.
Tuesday was the day of the run, after we sold a ton of raffle tickets and got everyone signed up we went on Lily’s Run! Curt and Denette have a rental company for outdoor vehicles and let us drive the 4 seater Polaris RZR and we were able to put Lily’s car seat in it and Andi sat next to her in the back. It was a blast! We followed 50 some bikes who were all riding for Lily! For our Lily! They all had their green CDKL5 band on their wrist and it choked me up several times to see the support for a little girl most of them didn’t even know. Lily LOVED that ride. She laughed, she smiled and every time a motorcycle rode by with its loud engine she giggled. It was all so intentional and just filled our hearts with joy. We just don’t get to do that kind of stuff with our kids and to have a week of just pure fun was so good for the entire family. Oli got to hitch a ride with Grandma Cheryl and Papa Steve in their truck. He was included as well, no worries. We made 4 stops and by the end all the kids were in the truck and Andrew and I were pelted with rain, but we laughed the entire time and just had an amazing day. During one of the stops an older gentleman who appeared to maybe have drank a little too much came up to Lily and me and said “don’t worry, God will take care of her” and I said “he already has”. And I meant every bit of that. It may have been one of the last places I thought I would see God, but he was there in Sturgis South Dakota! After the run we had a pulled pork dinner, supplied by Mystic Hills and following dinner was the auction. Oh my goodness what a hoot the auctioneer was. He was getting $100 for t-shirts, $20 for a rock! He sold a kiss on the cheek from Grandma Cheryl for $100! Andi Jane joined Grandma with that expensive kiss and kissed the winner on the other cheek. We also had real items like leather gloves, handmade blankets, a stay in Greer, awesome rings from Nightrider donated from my friend Carrie from Jr. High! We keep in touch on facebook and she saw our run and wanted to donate 2 rings! These are awesome rings too, they went for a high price and seriously people you should check out their website, it is sweet! Andrew wants a ring for the next gift giving time. Our anniversary is tomorrow, so it might not happen by then, but maybe Christmas. After the auction was done we had Lily pull the raffle ticket for the bike. We had sold quite a few online, but mostly all in person at the campground. The odds of the winner actually being there was slim, but you wouldn’t believe it, he was there! And he was the guy saying he really wanted that bike and may buy it off the raffle winner. When Lily pulled his name and Grandma Cheryl went over to him to hug him and congratulate him he said he wants to donate it to the auction. I doubt there was a dry eye there. What a tremendous sacrifice. OVERWHELMED! The bike went for $4,000 in the auction! I forgot to mention the poker run winner and looser also won a cash prize but donated that back and the 50/50 raffle winner donated his money back.
The couple that organized the run was Michael and Chris Burgen and they do this type of thing yearly getting toys for disadvantaged children. They even rode a ton of toys to kids in Joplin, MO this year. They were so gracious with their time, their knowledge and their support. I just can’t say enough about everyone who made it out. I want to name everyone personally but I can’t. Just know there were many hands taking part and each one meant the world to us.
So when I say OVERWHELMED I mean OVERWHELMED! We don’t have a total yet on the run, we still have to figure out the total bring in, but it was so successful! So BLESSED SO OVERWHELMED!
The next day we headed to Colorado, long story short we had 7 people ride from South Dakota to Colorado is a truck. Andrew laid in the bed with blankets, a sleeping bag and 2 tylenol PM’s. Funny now. Not so much back then.
We got to spend the rest of our trip at Andrew’s brother Jeremy and Andrea’s in Windsor, CO. And what a great way to spend the rest of our trip! Our nephew Mason is 6 months and crawling and it was the first time we met him. That made me sad, but so glad we finally got to formally meet. It was also so fun to see Oliver and Jayda who are only 11 days apart! She can talk circles around him, it was so funny. Thursday they took us out on the boat and we spent our day there. What a great day! The kids had fun, Lily enjoyed it so much! We just tied her car seat to the captain’s chair on the boat. Andi got to ride a jet ski and I got to swim in the lake. Something I just love to do, I love swimming in natural water. Maybe that makes me weird and although it was cold, it is just so fun! Andrew got to wake board and not too bad for an old dad, he still has skill! Then end of the night was spent with wine and Chinese food. And Friday we said our goodbyes and Ariel, the kids and I flew out on Allegiant in Ft. Collins. Not as great as Mesa Gateway, but no point in complaining. It was a great vacation. Absolutely wonderful. So great we can’t wait to do it again!
I will make a formal announcement with the money raised and more pictures, but I just wanted to share our trip personally like I always do.
FantasticallyFun! Blessed! Overwhelming!
Thank you thank you thank you to those who helped along the way, we got help putting the bike together from Liberty National Bank in South Dakota, they paid for casual day and the money went to help us fix up the bike, thanks to our sister in law Carrie for setting that up! We had help from friends The Porter’s, the Abbot’s, the Grimes’, grandma and grandpa Nothdurft, the Yaegaer’s, Tanner Stump, the list could go on and on!
Thank you for those of you who purchased raffle tickets, and those who made it out that day. What a fabulouslyfun, overwhelmingly blessed week!

On the Road Again

2011-08-06T06:26:00.000-07:00

Andrew and Tanner (my nieces boyfriend) pulled into Ft. Collins last night and stayed at his brothers place. They left Greer at 5:30am and made it to Ft. Collins by 5pm. I have to say that is why I did not want to drive with him, I can imagine they never even stopped to pee. Just went in beer bottles and when pulled over the cop drank it.. ok so never mind the last part ....
The raffle tickets are selling online and I am sure we will sell a bunch in Sturgis! This is really exciting event to take part in. I did want to mention, we are not staying in Sturgis. The kids will probably never even see Sturgis, unless we go during the late morning one day, we will be quite a distance from there. So I know those that know me know I wouldn't let my kids hang out with saggy milkers (quote I got from a friend that I just loved), body painted naked ladies of the Sturgis Rally, but if you were referred to my site and don't really know me, rest assured. Although I will do all in my power to go out one night and see all those saggy milkers for myself, rest assure that my kids will be safe and sound with a family member in the house we will be staying at.
The kids and I fly out Sunday at 7am. I didn't say be at the airport at 7am, I said flying at 7am. I mean, kids up, loaded into the van, unloaded at the airport, wait in line for seats, go thru security and then on the plane at 7am. Wish me much much luck. Thank God I am bringing my niece Ariel and she will fly with me and help out this trip. I would not have been able to do this alone and I really didn't want to drive with Andrew and the kids. So while it will suck getting there so early, like 5:30am early with 3 kids, it will also be nice to get in at 10:30am and have the whole day there. We plan on staying thru Wednesday, the run is Tuesday, then we will all drive to Ft. Collins and stay 2 days where we finally get to meet our new sweet nephew Mason! He was born in February and we have only seen him thru pictures. We will fly home from there on Friday, thanks Alegiant Air!
The new neuro was nice. He was on time and very thorough, spent an hour with us. Most of her records did not make it to him so we got to go over almost 9 years in that hour. Andi went all ADHD in there and was hard to manage, there was no way I would make Lily's appointment in Phoenix and get to school in time to pick her up so I had to bring her along. I mentioned how bad the seizures were and he rx Depakote since it helped for awhile the first time we tried it. I have the script sitting on the kitchen counter. Since I got her dose back up to regular on the Clobazam she has been doing much better. He also bumped up her VNS so that might be also what is helping. There were a few things that bothered me and the timing was just all wrong I guess so it bugged me more.
Backing up I was told we could use Make A Wish for Lily. Now I always thought of MAW for kids with cancer who aren't going to survive. I think it is an amazing organization and just never thought it would be something for Lily. So when I kept seeing CDKL5 families talking about wishes, I inquired. Some used their grant for equipment needs, vacations, etc. I looked into it and most likely CDKL5 is a qualifying disorder. Now as you can imagine that didn't really thrill me. I mean, it would be nice to have a wish granted, but the meaning behind it means Lily's life will not be a long one and knowing there are girls in their 20's with CDKL5, I guess I just trust that will be Lily as well. But then again, we don't know anyone older since this diagnosis is so new, I just watch these older girls with so much hope and inspiration and want to see them in their 40's and beyond. That Wednesday morning I got the call back from MAW Phoenix chapter and she was asking me questions and was going to follow up with our Pediatrician to see if she qualifies.
Back to the appointment, the Dr. says at the end, "did your previous Neuro talk to you about sudden unexpected death" and then started talking about how an epileptic has a higher death rate than the average population etc. I said he never said anything to me, but I don't think he felt like he had to. (in my head I was thinking like you don't have to) I get it, he was making sure I understood the importance of seizure control. Like that hasn't been my mission, my passion, my life's desire for Lily for these past almost 9 years. He recommended going back and completing the corpus callosotomy (brian surgery) and I was very negative towards that option and maybe that was his angle to push the surgery, she could die without, but she could die with it and I think a part of me died that last surgery and I am not ready to let more of her or me go. But I think after he just sat there and listened to me rattle her history like I was a medical professional myself, I am not bragging, I really think I could have my doctorate in neurology if given by life experiences. OK maybe not, but at least enough to be a PA. Anyway, my other neuro knew I KNEW what can happen. What could happen in her bed while sleeping at night. While at school away from me, on the school bus, during meals. I know what COULD happen to our precious girl. I just spoke with Make a Wish for heaven's sake. But if I take every step in front of me thinking about what COULD happen, I'd never get anywhere. I take my strides into a foggy future with long quick steps. I get it, I really get it, this was important to him to share, but I won't tip toe around this world with what COULD happen following behind me.
So we go to South Dakota with a bike to raffle, a bike run to run, an auction to auction with purpose and meaning. We want a cure. We want in the future a little girl with CDKL5 will get a newborn screen and when she tests positive for CDKL5 they will give her medication that will keep her from ever going to a Dr. letting her parents know that at any moment a seizure could take her life.
So if we get a wish granted and when that day comes where CDKL5 is cured I will write MAW a huge check giving the money it took our wish to be granted back in full.
So wish us luck, on the flight, on the raffle, on the run and the auction, pray for safe travels and goals to be obtained, and some seizure relief while we are far from home.
Thank you to all of you who support us and love us.
HOPE-LOVE-CURE CDKL5

Here is the bike in it's finished form

GAHH!

2011-08-03T08:56:00.000-07:00

Seizures suck. They really really suck. God, I hate seizures.
We went low on clobazam again, my fault. We get it from Canada and every time I call to order it they will call me back the next day on my house phone, I get the message after they close, call back the next day and then they ship the next day. Still my fault, I know this and really need to call sooner. But my middle name is procrastination.
Anyway she went from 1.5 2x a day to .5 2x a day for 2 days while waiting for it to show. I knew seizures would act up during that, but she's been back on her regular dose since Monday night and this morning was drop seizure then scream and cry NONSTOP she then got the hiccups then went into a grand mal and then she seemed better. I know weird. It appears the GM stops the drops though. But she was doing great in the beginning of vamping up the VNS, like best she had been in a long time, THEN it seemed like the higher we went the worse she was getting. Is that even possible? I am just so tired of seizures. So so tired.
It is always a great reminder though of what we are raising money for. What we are fighting for. When I think about Lily's life I think she is a happy little girl and that is what keeps me going, but mornings like this make me wonder how happy can she possibly be? I mean she cried herself into hiccups. She has been grinding her teeth lately and haven't done that in years. It strikes me as stress. I don't know if that's true, but I don't want to think of her stressed. Ugh. My baby girl.
We meet the new neuro today at 1:45pm. Praying he is wonderful. I had such a great relationship with our last guy, for 7 (!) years, so the bar is set high.
We head out to South Dakota Sunday, the girls will miss school all week but it will be worth it! The run is on Tuesday. Please look at the top of my blog with the pages and click on 2nd annual Lily's run for more info and how you can buy a raffle ticket for the refurbished Harley my husband has been OBSESSED with for the past 6 months. Watching him give that away might be the saddest and funniest thing to happen this week. He loves this bike.
We have had so many people take part and help out with the bike either financially or physically and we can't thank you enough. We are thrilled to have this opportunity to fund raise and I can't tell you how important it is. Kids shouldn't have to live like this. I want all our efforts to make the future children with CDKL5 to have little or no affects from it. I want our life to serve a purpose and this is it.

Weekend fun!

2011-08-01T16:13:00.000-07:00

Andi Jane had been asking all week to sleep in the living room with Lily on the floor. I finally let them do it Saturday night and they were so cute. Until 1am Lily was completely off the blankets rolling around and talking to herself so I put her in her bed only to have Andi come into our room about 30 minutes later saying "you promised I could sleep with Lily" and ended up in bed with us. Fun times. Here they all were reading before bedtime.

Then Sunday I finally wore him out and got Andrew to buy the chalk paint and paint our cabinets. This all stems from when I saw the fridge on Good Luck Charlie, I was like what is that? A chalkboard fridge? It's amazing!

I posted on facebook, how do I get one of those and apparently there are lots of blogs of how to do it to your fridge. I tell Andrew, we have to do this and he thinks I'm insane. After much debating I agreed that ok, painting our fridge is a bit extreme, so how about some cabinets and he agreed. Then it just took weeks of hinting, suggesting, nagging and begging but Sunday after church and lunch our family of 5 went to the depot and for $15 for the paint, 2 tiny rollers and a couple brushes we had our supplies.

Let me first say I am not even trying to pretend I am a craft blogger. I don't even read other crafty bloggers. All it does is show me my drastic failures as a woman. I like crafts, I think they are fun. For about 20 minutes. So I am just sharing this because I think it is pretty cool and it would have looked far worse without my husband who just so happens to be a paint contractor who has been painting homes for 10 years. Need a quote ;)

And I have to be honest, I can probably name 80,000 things I'd rather do than do a home improvement project with my husband, like say a needle aspiration in my thyroid, but I knew the outcome would be worth it. And this was coming off the heels of putting a trampoline up with him just on Friday so that should tell you how much I wanted this thing.

So here we go, I don't really have a before, he started painting before I knew it but here is during and after.

I think they like it too....

1st and 4th Grade!

2011-07-29T11:33:00.000-07:00

Today is the last day of the first week of school for my big beautiful girls! It started out hectic and no bueno, but has ended fabulous! Love my kids so much! Oli has kept me on my toes since the girls have been gone and Lily seems so much happier spending her days at school and I love the stories Andi Jane shares when I pick her up. It will be much easier when Andi gets approved to ride the bus with Lily, but until then we will be racing to school after the bus picks up Lily and racing home to meet the bus after picking up Andi. Come mid August things will get much easier. Very sad that we are coming to an end with our fabulous caregiver we wish we could adopt into our family, but she's off to MN back to college, so come Sept we are getting new changes again, but right now feeling grateful for all we have been given.

Resurfacing

2011-07-25T12:19:00.000-07:00

I found this old post I wrote almost 4 years ago and it made me sad. It made me see how far I have come, yet how things haven't changed at all. I miss this old blog I kept. It felt like the silly old me. Light hearted. With some heavy touches when needed. I like who I changed into after having Lily, but wonder if I lost that girl along the way and have become this me. Do we ever stay the same? What if you were the best you then life hit you upside the head, can you get her back?
I don't know. I wanted to share this post though...
CLICK HERE

so yes i am still on my work break reading my old blog. so yes time management is not a great skill of mine. now seriously off to work.

I think I'm lost, I am looking for easy street.....

2011-07-25T11:26:00.000-07:00

Sigh... I am tired. Life is wearing on me. This beautiful ride of a life isn't looking all that pretty.
I'm fine, just feeling beat down. Several rough mornings in a row just starts an attitude that I have a hard time flipping.
It should have been an awesome morning getting the girls off to school, but it wasn't. Lily's bus never showed and by 8:20am I no longer had the option to sit on my thumbs waiting because Andi had to be to school by 8:30am. Oli decides for the 2nd day in the past few to open the front door having our dogs fly out like they are racing for a prize, but I couldn't do anything about it. We fly to school, the girls just make it in time, but I was grumpy and I didn't get to be excited with them and their day. I knew what awaited me at home was 4 voice mails telling me so and so found our dogs and could we pick them up and why did I know this? Because this just happened the other day. Yup 4 calls, 2 different people. Go pick them up, very nice people and I was very gracious, but my day was off by an hour. I have so much work to do. I have this newsletter I need to finish up. I have to get on the ball for the fundraiser in two weeks in South Dakota. I feel like I am being swallowed by life and I can't get out. I don't know what I am doing wrong. I have good kids. It isn't like I'm fighting with them. I am busy but aren't all moms? I know we have more therapy and dr. apts than others, but how do others seem to function while I feel like I treading water and not getting anywhere? Is it because I am working more now? I think if I were a stay at home mom again it would be easier, but would it? I don't know. Maybe I just suck at time management. But it seems like I am sucking at every aspect of my life. I still want that damn pause button I've been asking for since Oli was born. Where is it???? We can pause live tv, why not life? Oh the things I would be able to get done with one. Who knows maybe I could be the next Stephanie Meyers if I had a pause button. I could write about vampires, love and CDKL5. It would be beautiful and so popular and I'd have so much money that I would never have to lie awake in the middle of the night wondering when all this Dave Ramsy stuff will prove itself and we get some breathing room.
Oh the babbling of a girl who should be working through her lunch break, not writing on her silly blog she can't even keep up with.
Sigh.
Where is that pause button and can someone please direct me to easy street?

Life Ain't Always Beautiful

2011-07-12T08:24:00.000-07:00

There is a line in a song by Gary Allen with the line “life ain’t always beautiful, but it’s a beautiful ride”. And sure it may sound cliché, a little corny even, but are truer words ever spoken?
I don’t know anyone with a perfect life. Sure I know some who have had it easier than others, but we all go through trials. We all have had our hearts broken. And honestly hurt hurts. We can’t really measure our hurts, there is no stick to do so, life hurts.
I look back at my life. I look back at lives of those I love and I think how did we survive? How are we smiling today? Yet we did, we are. Life is about the living and living as best as we can. Holding resentments and anger only inhibits us from moving forward. I read in a book once a line that really rang true “holding onto anger towards someone is like hitting yourself in the head over and over again and expecting the other person to get a headache”. So true. It’s been a tough year for me. Probably one of the toughest ever, yet today I can say I have a smile. I have joy in my heart. I hold no hate or contempt in my heart for anyone. And I can say that to you with the most sincerity. Did that just vanish, did I hide it? Nope. I worked through it. I worked though it over and over again. It is the same thing with Lily. Every single birthday I am reminded of all we don’t have with her, yet I don’t spend that entire year thinking of that thought. I give myself a day, sometimes it takes all day, sometimes it just takes a few moments, but I let myself have those moments, then I remember the light that Lily offers and thank God for what we have. I deal with my past year in the same way. Sure there are moments, sometimes days and it used to be weeks I got stuck. Stuck on thoughts, stuck on anger, stuck on hurt. But then I look at the world that unfolded in front of us now and I see a family I never saw before. I see a marriage that I never saw before. I see that we took the wrong road in life. I have taken a lot of wrong roads, but we still seem to find ourselves back where we belong. I know a lot of things happen and things change you. But it is up to you how you are changed. I will never be a naive young woman, do I miss her, sure of course sometimes, but I didn’t choose bitter, I chose experienced. I choose wiser. Some days sure, I feel rained on. But it doesn’t last. There are days I get to spend a day at the water park with just Andi and we will play all day and just live in the moment and get pizza and ice cream and talk about our day and about 1st grade and all her friends, and I think this moment is brought to you by a great attitude.
I know I have not had it as bad as others. All I know is what I have been dealt. All I know is what I feel; all I know is how I handled it all. And who am I kidding, I’m only 30…. Ok 32, I will be dealt a lot more, but what I do know is who I have in my corner, and who is cheering me on and who carried those burdens for me on his back.
No,life aint always beautiful. Tears will fall sometimes. Life aint always beautiful
But it really is a beautiful ride.

Things I have learned getting older while raising small children

2011-07-09T10:11:00.000-07:00

Things I have learned getting older while raising small children

1. Once you hit 30, you start loosing count… ie when I heard Brittany Spears was 30 now I said, “I didn’t realize we were the same age” we’re not.

2. Despite what you “thought” a 4 year age difference is not a big enough gap to not have fighting children. I’m sure a 26 year gap wouldn’t… wait that is the age gap between Andi Jane and me.

3. The minute you sit down to eat and maybe even sigh a sigh of relief you will then look over at your special needs daughter, who has issues with constipation, at that moment start trying to poop.

4. You finally understand what your English teacher was explaining to you about antagonists and protagonists and put your children in each role.

5. A 6 year old and a 2 year old never seem to compromise on a show

6. Boys will pee anywhere and on anything.

7. A chair your 6 year old never wants to sit in will all of a sudden be the only chair she wants to sit in once she realizes her 2 year old brother loves that chair. See # 4.

8. When you first became a mom all you wanted to hear was that word, mom. Many years later you wish and maybe just for a second, they’d stop saying it. At least just for one blessed minute.

9. You realize that all the things you would complete in your 30’s will have to wait til your 40’s.

10. If all he will eat is yogurt and oatmeal that day you feel accomplished.

11. You are thrilled your aunt flow came to visit. Again.

12. Ecstasy is 10pm when everyone is asleep and you are in bed with your remote, DVR and a glass of wine.

13. A treat is a $4 Starbucks, hopefully handed to you by the cute barista.

14. Turning up the volume only turns up their volume

15. You can’t remember the last time you bought yourself something at retail price.

16. Sleep is a luxury, not a right

17. No matter how many kids you have each and every one of them will have something weird medically, one can be as serious as a one in a million gene deletion, and one can be as minor as reoccurring ear infections, but they will all have something “weird” going on and it is all important to you.

18. When you hear “look at what YOUR SON just did with MY soap” coming from the mouth of your daughter, you not only don’t come, you just write about in your word document while laughing to yourself.

19. You hope that because their parents have tattoos they will think they are so “old school”

20. Just because it was ok for us to get married at 22 and 19, you pray they don’t even think about it.

21. You are no longer jealous of those young girls in their 20’s because you know all they have in store for them

22. You’re also not jealous of those empty nesters because you know what they are missing.

23. You are pretty happy right where you are.

24. Although get-away trips do seem to be all you fantasize about

25. You don’t care where you go but a date with your husband is the highlight of the month

26. You really miss the dimples in their fingers when you realize they are gone.

27. You realize that even though your life has changed absolutely and completely, you would never in a million years even for one spilt second wish for a life without them.

28. You never loose hope for them, no matter what any one says

29. You still mean everything you said in #27 even after seeing what your son did do with her soap and just spent 15 minutes cleaning it up

30. You stop your list on 30, thinking once again that is how old you are.

The 4th!

2011-07-07T07:56:00.000-07:00

We went to Greer for the 4th of July weekend. We invited some good friends of ours and their kids and we had such a wonderful time! Greer did have some devastation, but it is far more green than not. I will upload to flickr, it is easier that way.
My parents had bought the only store in town just weeks before the fire came through, it has been a crazy time, but it has been a good thing, there was some smoke damage so the place got cleaned out, painted and looks amazing! lazytrout.com (the website it still a work in progress)
We spent time fishing, went to the local museum for "tee-pee time", one day I worked at the store running the register. It was a lot of fun, it was busy the whole time and it is so fun just to talk to the people who came in. We spent evenings with wine and great food while the kids all just played and played. I don't think weekends get much better than they were last weekend.
We just love summer in Greer and are so thankful for those shifting winds and those firefighters who saved so much of our little jewel in Arizona!
We are getting geared up for another trip in a month from now! We are going to South Dakota during the Sturgis bike week and we are having a run for Lily! Andrew has been working on a bike he bought for $500 (an old Harley!) and thanks to donations from others he has made this thing look amazing! It is still not done, but we will be doing a bike run and auctioning off the bike! I know Andrew may have some tears rolling down his face and a very tight grip when he hands it over, but it will be handed over to the highest bidder! We have a lot to do in order to get ready to head up, but we are looking forward to spending time at Andrew's parents campground and this will be my first time seeing Sturgis for the first time. We won't be staying in Sturgis, but at Andrew's parents place in Deadwood Mystic Hills The run will be on Tuesday the 9th and auction to follow afterwards. I am really looking forward to this experience! Last year they did this and raised a lot of money, we are hoping to raise even more this year! I'm also hoping to sneak out one night and leave the kids with grandma and grandpa and see what all this talk is about, I hear it is quite the week!
I am still wanting to do another Splash for a Cure, but am thinking of doing it at an indoor pool during a different time of the year. But one thing at a time for sure!
So keep checking back, we'll be getting more info out and soon!

Leaky butts and other fun things

2011-06-30T09:58:00.001-07:00

Monday morning I woke up to Andi in our bed, I asked her "did you pee" "yup" she replied. Ugh knowing that I now had to wash her sheets, the same sheet I just had washed the day before because Elmer the Guinea Pig pooped on them. Then I hear Oli whining a groggy whine, go into his room and the stench hits me first, "what the hell happened?" I lovingly ask and then I see vomit ALL OVER like all over. Rug, bed, crib, wall... like ALL OVER. Double to the ugh. More laundry. I mean my poor baby is sick. Plus I had to go to work that day. Text my niece who I was going to be dropping all 3 off at the movies with to say it was just Lily and Andi Jane and take Oli to work with me. He was fine all day. Nothing seemed to be wrong with him. Fluke I guess, until he woke up at 5am the next day with a fever. Ugh. I had to work again so I had to beg my niece, please say it's ok to watch him, she of course so kindly said it was ok. And Wednesday I was so looking forward to my day off and having a swim play date at a friend's yet that morning I went into his room I found him with poo leaked all over his sheets and still a fever. Ugh. And his butt is still leaky today, Thursday, leaving us another fun day home all day long. Did I mention the heat wave? It's supposed to hit 119 on Saturday. So I guess we don't have many options anyway regarding getting out.
Andrew took Andi Jane today to go to Greer. I work on Friday's so I will head up after 3pm tomorrow. Pending no leaky butts. Lily has me nervous, I gave her milk of magnesia yesterday to help her, which helps some, but nothing miraculous, yet today she had a diaper full and that makes me think the leaky butt is heading her way. She is not someone you want to have a leaky butt so I am praying that MOM worked, but honestly pretty much know that is not the case. A 4 hour drive is not safe with a leaky butt. If it isn't changed quickly rash sets in. Sigh. This is all my fault I said on Saturday "my kids have been so healthy lately" what an idiot.
Lily has only 2 appointments left to bump up her VNS and it will be at the highest setting the nurse practitioner can put it too. We'd then go see her Neuro, but he is in Oklahoma, AND the guy who was set to take Lily on is moving to Colorado. Good times. It appears Barrow's pediatric neuro dept is going away. I am taking this as a get out of jail free card. We now have every right to move on over to Phoenix Children's which I actually like better, I just pray the guy who we were told to get in with is good. I know Lily sees a lot of Dr's but Lily NEEDS a pediatric neurologist epileptologist. Not too specific. But when you have a kid with seizures like Lily's, especially a dx of lennox gastaut syndrome following her CDKL5 dx, you NEED an epileptologist.
BUT I do have good news. Lily has been doing great with the VNS! Her big seizures are typically less than one a week, more like every 8-9 days. She still has clusters of myoclonics and drops, but she has made it through her therapies with out any type of seizure. She can go hours with none. This is a huge accomplishment. Although she had one Sunday and then again on Wednesday, I am afraid she has leaky butt coming on which would make sense why she would have more seizure activity. She seems pretty quiet today so I am just sure it is coming. All and all though she is doing well. She is happier sans seizures, she is doing better in therapy and we are thrilled to see her doing so well. It seems like it has been a long time since we have seen her like this. And we are happy.
Looking forward to getting out of this ridiculous weather. I rarely complain about this weather. I am a true Arizona girl who would rather a couple hot as hell months and the rest of the year amazing, I even have a rule, if you praise the weather in the winter you are not allowed to curse it in the summer BUT 119? C'mon. Curses.

"He's the third"

2011-06-27T08:07:00.000-07:00

We use the expression “he’s the third” in jest all the time. Like when he is on his 8th otterpop in an hour, “he’s the third”, when he shows up to a restaurant in a bright orange Halloween shirt that blinks (two sizes too big), camo shorts and boat shoes we say “he’s the third” but the more often I say it, I start to think, holy crap we do say that a lot. I do not in any way feel he is neglected; he is just… well the third. We are both the third child as well, so we have a huge soft spot for that place and quite frankly were not going to be satisfied until that spot in our family was fulfilled, and I could not have asked for a more perfect person to fill that spot!
But let me get back to my post, “the third” said by us all the time is a term of endearment, yet tinged with a sense of don’t judge me.
When I think about Lily in her first 2 years and it was just us, my goodness that kid was dressed so perfectly. Never did she ever not match, not even her p.j’s. And on top of her, ohh man I was in control, ok so not much has changed there, but Lily was our first. She was the most perfect thing that ever came to this world. And boy did we love her and treat her like she deserved. Yes she had health issues, yes we were heart broken over the way her life was unfolding before us, but we were determined to give her 100% of us.
Then when Andi Jane came it was like she was a first all over again in some ways. Her first words were sacred. Her first steps were followed and ohhhhh’d and ahhhh’d over. The camera followed her constantly and I even got enjoyment out of her first public melt down at Target. I took a picture to document it. Now her clothes weren’t matched as perfectly as Lily’s. And while she got all of Lily’s old clothes, she never wore them the same. She was/is anti-matching and in the beginning it bothered me, but these days I rather enjoy her and her willingness to be different.
When we added Andi Jane, I did feel a sense of loss with Lily. I felt guilty for not being able to give her every part of me like I had before Andi Jane, but when Andi was old enough to move, it was Lily who she moved to. It was Lily who she tried to feed when she could barely feed herself and in those moments I knew adding her was the best thing for Lily.
And here we come to “the third”, the kid we tried the hardest to conceive. The kid whose birth was nearly perfect, the kid who nursed perfectly and to this day the most handsome boy to ever walk this planet…. Just let me ok.
I did feel that same loss to Lily and the guilt in those first few months especially, but the same thing with Oliver as was with Andi, those kids love Lily and she loves them so I never doubt our bigger family even with a special needs child. I know they all benefit from each other and I quite frankly wouldn't know what to do with my self if I didn't have my chaos.
But as much as I love and adore him, I don’t have the time to be on top of him. I don’t have the energy to keep up with him, so yet he gets away with stuff. We laugh at things we never would have with Andi, and yes it probably isn’t “right” but I am writing this and sharing because I have a list of things that constitutes Oliver as the third and I am hoping others who are there, have been there can relate and even add to the list, so let’s go here are some of ours.
You know he/she is “the third” when:
1. you go get his shoe size fitted and you find out the ones he wore to the store were 2 sizes too small
2. his baby book is… where is it?
3. he jumps from the couch to the floor. all.the.time
4. he eats otterpops like he is in some kind of competition
5. you tell his sister to just let him bite you, it won’t hurt that bad
6. there are times when you realize he literally has no shoes that fit him
7. he needs a hair cut
8. he didn’t get a 2nd birthday party (I feel a little bad about that one)
9. we actually let him “cry it out” and to be honest he sleeps the best of all the kids
10. we find him “chooo choooing” his food to himself at dinner time.

Those are just to name a few, we’d love to see more and appreciate no calls to CPS. Thanks.

Riding solo

2011-06-26T07:35:00.000-07:00

Andrew has been out of town since Wednesday, I joked to him on the phone "you haven't been gone this long since I kicked you out" I paused and he laughed. Sometimes my jokes are "too soon" but he laughed. It sucks when your hubby is gone, and you don't want him to be. He's been working his tail off in Greer. My parents have a lot of property, including the town store they just took over, that needed a lot of work. Insurance was paying for it to get the smoke damage out so they decided since the place was cleaned out it was time to extreme make over it and that is where he has been, working with my family while I am holding down the fort here.
I know there are single mama's everywhere and I give you so much props. Especially if you are doing it alone with a special needs child. I had to go to the post office and had to load up the whole crew and it isn't like just jumping in the van and everyone buckling themselves in. But I am not going to complain, it is my life. It is just hot right now. 112 hot. Then I had a very looked forward shower I was going to go to and I had a sitter set to come and be with Lily and Oli and she didn't show. So I had about 10 minutes to get everyone ready and loaded up. I felt like the Clampets showing up, but luckily the mama is my best friend so I know she doesn't judge me as I show up and I have a clown car that kids just keep coming out from. Oh did I mention Andi had a play date that turned into a sleep over? Oh yeah that happened too.
Actually though the play date was the best plan ever! I am not kidding when I tell you I showered in a 4' x 3' shower with Andi and Oli. Andi was in my bed every night. Every time I went the bathroom I had Andi and Oli right there. I could have been blowing out the place and they would still be just right there. Just right there. But a play date meant Andi had someone to play with besides me and no one to fight with, poor Oli. I was starting to think it was an Andi Jane's world and we were just living in it, so the extra child actually really helped!
We now all need to get up and ready for church which I am dreading, WE have nursery today, yet WE are not here so I have nursery. There are typically 8-12 walkers whom I LOVE, it really is my favorite class to work in, but I need some reinforcements, if you have 2 criers you are so doomed! I'm sure they will find someone to help me, but I'm also sure I will be dripping sweat by 12:15pm.
He comes home tonight this evening, if all goes to plan. I sure hope all goes to plan.

2011-06-19T20:38:00.000-07:00

This may be a bit rambly, but what else would you expect from me? I've been on the computer for 2 hours working on the IFCR newsletter which I enjoy when I finally get the time to get on the computer and work, but man time just slips away when you do things like that. I have no experience at all, but I think it is coming along quite nicely if I do say so myself :)
I have the USA pageant going on in the background and currently they are on the swimsuit competition. Did I mention I spent all day eating? We had my parents, my sister and her family and my brother and his friends over for swimming and bbq and man we ate ourselves silly. And now I am enjoying a glass of wine, blogging and watching 22 year olds in swimsuits. Hmmmm...
I need to throw in a Lily update before I go off the deep end... She is doing very well since the VNS got turned on. While she still has seizures they are spaced out by days (!) now and she is obviously much happier. It has been so nice to enjoy Lily in her best state. No uncontrollable crying spells, no crazy seizure day, she is really doing well. When she does have a seizure it does appear to be bigger and stronger but as long as they are spaced out to 1-2 a week I think that is a huge accomplishment! The summer has been treating us well so far, she is getting PT in the pool which is her favorite and she seems to be enjoying herself during all the activities we have done so far, movies, lots of swimming and trips out and about.
Today was a nice day, Father's Day. We had a great way to celebrate the dad's in my life. It was also my parents 40th anniversary. 40th! 40 years?! My mom married my dad at 18. Do you know what that means? She spent more than 2x her life with my dad then without. Andrew and I are coming up to our 10 year and I think wow we've come a long way, but thinking about all my parents went thru... holy crap! If I didn't get a good example of sticking it thru thick and thin then I don't know who did. I admire my parents for their commitment to their family and I know it wasn't easy and there were times as a kid I thought they'd be better apart, but thank God they persevered and I think they are truly blessed because of that commitment.
It makes me think about where we were 11 months ago. I was at a point where I didn't think I could stick it through. I felt depleted, finished and quite frankly unwilling to spend years unhappy in hopes for years later of happiness. But you know what, changes I never knew were possible happened and it is what made me reconfirm my relationship with Christ, seeing changes that I knew could only come from him. It just made me see how grey this world is. There is no black and white, it is all shades of grey. There are no exact formulas for life, especially for marriage and parenthood. What I do know is a constant and absolutely important part of our life is our relationship with God. Our beliefs are what make us who we are. Gotta throw some good old country jargon in .... "you got to stand for something or you'll fall for anything" I know cheese ball, but I can't tell you how true that rang for us. Andrew spent a lot of time not standing for anything and he fell. And he fell hard and he took me with him, but I am confident that it won't happen again.
We got married on the sand (literally) and we about washed away. We reconfirmed our marriage on the rocks and I feel certain that we will be celebrating our 40 year anniversary as well 30 years from now. And no it won't always be easy, but we have a foundation we never had before and that changes everything.
Evening gowns now and battery almost dead. I think I am just about dead tired too.... not even sure what this all says but I'm tired and rambling seems to be all I'm good at these days. I am still working on sharing our story, but it just never seems to come out exactly how I want it to. So for now I will just say good night.

Heart of fire

2011-06-11T06:53:00.000-07:00

I have no idea what my problem is lately. Getting online and updating is just not happening. I have written, yet not posted.
On Thursday I took Lily and Oli to neuro to bump up her VNS setting. That went well, we were told who our new neuro is. I am happy with the change, we've seen him several times. He actually said years ago he really thought Lily was a Rett girl and couldn't believe she had the negative diagnosis. It was actually the reason I started looking into CDKL5 again. We didn't see him though on Thursday, we won't until August 18th .. our 10th wedding anniversary! I'm about as certain as there are wild fires going on right now we won't be out of town at that time so why not celebrate going to the neuro. At that VNS appointment she said we could make this go faster by coming weekly instead of every two weeks. I gladly agreed, although it is a far drive and hellish with gas, we really want this VNS up to therapeutic level. I am fairly certain she is doing well because of it and seems so much happier. I really do think she is happier. Her crying spells have really gone down and we see lots more smiles. Also at that appointment she said even if we could come on Friday that would be ok, I said well we are actually going to be here for a cardio appointment so sure, we'll pop on by to see you as well. And she said great.
Andi Jane had been at VBS all week at church which was really nice. Two of my good friends were able to take her after VBS during the week and I was able to work. Bummed VBS is only a week!
Friday we went to Cardio at 8:50am (apt the day before was 8:30a!) They did an EKG .... back up... I mentioned her going to cardio a few months ago right? When I told her geneticists about the passing out in her stander it got us a free pass to see cardio! Yay! Anyway that appointment was finally yesterday. A very nice Dr. I was genuinely impressed. He said although he is pretty sure her EKG is normal for Lily, he wanted to make sure it was normal for Lily. I guess between the bumps there should be a wavy line and Lily's is flat. He said it could be totally fine, but would feel better seeing her EKG for 24 hours. So after being there over an hour (they bumped up VNS while there too) he sends us to the hospital for a .... crap I forget what it was called... holter. Yes, he sent us to the hospital to get a holter monitor. I'm a brain gal, don't know anything about the heart, just that it is fragile and we must handle it with care or it breaks.... hardy har har.
I was with Lily and Oli and Oli had practically bathed himself in the sink while I was talking to the dr. I figure quiet and wet beats dry and loud. I walk to the hospital, refusing to load up in the van just to unload just a few blocks away. So I am walking, holding a soaked boy, pushing my Lily through downtown hospital area. We wait in admitting for ONE HOUR! ONE HOUR! Then we sit with admitting for at least 20 minutes. I just thanked the Lord Oli is not Andi at 2 years old and we survived it. Everyone apparently finds Oli and his Justin Beiber impersonation very charming. Over and over again. Did I mention he can only say Baby, Baby, Baby Oh... da da da MINE... MINE...
Finally up to cardio where we WAIT again. Poor little old lady was going to have a heart attack telling Oli, no not in there, no don't do that. It isn't that I wasn't watching him, it was that she had a lot of rules I was unaware of.
FINALLY it took oh maybe 2 minutes to hook her up. Then we were out. They told us to take it off Saturday at noon. She is still in bed but I am curious to see how it all held up last night. She isn't what we'd call a sound sleeper so I'm not so sure. Andrew ace bandaged her up last night so she is probably ok. I just know mama does not have the patients to do that thing again so it better have stayed on. We take it off today and drop it off on Monday and unless she is on the verge of a cardiac arrest he said we won't hear from him for at least 2 weeks. There must be a note in her chart to tell mom how long something will take or else she will call daily until she gets those results. Smile.
I'll update I'm sure sometime in 2011... of course if it isn't normal I am sure I'll update sooner.
Did I mention her sleep study showed sleep apnea? We are waiting for appointment with pulmonologist now.
It's been a roller coaster of a week. Last weekend we were in Greer from Thursday to Sat. We were woken up Saturday at 1:30am to tell us there was a pre evacuation, my dad told us to hit the road at 4am. It pretty much sucked. We had to wake up the kids, load up and go. The sky was full of smoke. It was intense. No one slept on the way home...correction, none of the kids slept on the way home. Dad did. I drove because I apparently handle less sleep the best. Cheers.
My parents got evacuated on Tuesday and that was when we thought this thing is for real. I am not someone who stresses out for things unnecessarily. I choose my stress for real issues. I never thought those fires would ever really go thru Greer. Wednesday night we got conflicting reports, but the one I read said Greer was engulfed and I just cried. I cried like we lost someone, I thought our town in the mountains, our heaven on earth, our summer getaway was gone. We don't get the beach, but we get the mountains. On Thursday we heard only 5 houses were lost and my parents were all safe. I think by Friday we heard 22 were lost, but my parents were still safe. Now the winds are just insane and they are still in danger. I *think* the most damage has already happened, but with only 5% containment and crazy winds there really is no telling. Even if the houses hold up, who knows what we will be seeing up there. Burnt trees? It's just so sad. We've never been this close to such tragedy and it is hard just sitting, waiting, watching. We are praying for those who lost their homes and especially the other towns the fire has hit, will be hitting who don't have their summer home there, they have their home there. Their lives. It is devastating. Totally devastating. We pray for the fire fighters out there protecting what they can, they are doing a great job saving communities, this fire is just a beast though. It hops lines, the winds are just taking it and it is so dry right now. We pray for some rain, some calm winds. 100% containment. This Wallow fire can suck it.
Ok well that is what we all get when I lack in updating. Long posts. I have a newsletter for CDKL5 that I need to get out by July that I am really having a hard time kicking it into gear. But today is the day. I am getting to work. My juices are flowing.
Here are a few pictures of us enjoying Greer last Friday unknowing the evacuation was just hours away... and one of what we saw from my parents yard.

April showers bring May .. good byes?

2011-06-01T13:27:00.001-07:00

I knew in April we'd have one good-bye to say in May. What I didn't know is we'd have 4 good-byes in May.
Yes I am still working on "The Story of Us" I've spent hours on it and still am not finished. Will share later.
But back to May good-byes.
Two caregivers whom we really loved left at the end of this month. It was for reasons out of our control and no hard feelings are shared by anyone at all. The exact opposite. Nothing but love for those two wonderful women who spent lots of time with our family, giving Lily their all. Ms. Sharon was like a Grandma to all the kids and they just loved her to death. Andi Jane says every day she wishes Sharon was still here. But we love Sharon and wish her nothing but the best moving on. But we can publicly say how much we will miss her right? And Ms. Julie wasn't with us as long, but she was good! She worked in a special needs classroom and incorporated all she knew with Lily at home. It was a sudden opportunity she couldn't refuse so we lost her, but deeply miss both women.
Lily's neuro is in Oklahoma. I don't know what else to say. I thought the tornado's would keep him here. But he is gonna be THE MAN there, so we can't wish him ill will, but he has been with us for 7 years. 7 years! He is the guy who says what do you think? What med do you think helped? What are your wishes? He worked WITH me, never against me (well except when he refused CDKL5 testing, but it was nice proving him wrong so that was ok), he was funny with British charm and no I didn't have a crush on him, I just really liked the guy and am really sad to have to change after all these years.
And I got a call yesterday from Lily's Music therapist that tomorrow will be her last day.

We're heading to Greer tomorrow after therapy and just going to enjoy the beautiful weather and all the charm that small town can give us.

God is in control. God is in control. God is in control. God is in control. God in is control.

Where have I been?

2011-05-28T06:11:00.000-07:00

Crap! I am so behind! Yesterday it dawned on me that I have a blog and when was the last time I wrote on it? So not like me to be so darn behind. The funny thing is there is a post in my head that I want to write. I go over it and over it. But never sit down to really get after it. Last Saturday Andrew and I renewed our vows and I want to share why. What happened between last May and this May. I want to share pictures. But I really need to share an update on Lily. The reason this blog exists.
So let's back up a bit. Surgery site is completely healed. She is totally back to normal. We turned it on last Thursday, but the setting is so low we aren't seeing too much change. Now every 2 weeks we will be driving our happy butts to Phoenix to slowly bump it up. All three kids. In the summer. In Arizona. In a van with sucky air conditioning. Anything for seizure control.
She had a sleep study, I think it was two weeks ago? Andrew took her. He said it was like staying to the Ritz! They called with the results and said she is experiencing sleep apnea and now we are referred to a pulminologist. I am not sure what the next step is, a mask? Ugh. We knew she was doing this so it is a nice confirmation, but still sucks. We see a cardio on the 10th. It's like all these new Dr's that we are not used to. I was happy with just the Nuero, Geneticist, and Eye Dr. Now we add two more? And on the heels of being given a new neuro.
I didn't call around for summer schools in time because I wasn't sure I trusted any of them since she stopped being able to attend Foundation for Blind Children, then I got one recommended, called and it was too late. So I am afraid it is going to be a boring summer for Lily. I am working 3 days a week now and she she'll be home with respite when I am working. But they won't be able to do much at all. No walks in 115 degree weather. No outside play. So pretty bummed about that. We'll have to think of some fun things for her to do inside. Maybe whipped cream play. Sensory buckets. I think the other 2 will go to Oli's sitter for 2 days. I'm not sure exactly how it is all going to work out. Child care during the summer will cost almost as much as I get paid.
Wow ok. Done complaining. Holy crap. No wonder I haven't posted much. Negative Sally here.
I love working now, but last year was easier being home all summer with the kids. Well... easy??? Ehh... but I felt better being the one doing things with them. Now it is going to be a whole lot different. Darn it why didn't I become a teacher?
Anyway. Working on my post about our renewal. Pictures included so check back. I promise I won't be away so long!
PS I am in charge of IFCR's newsletter and I have been working on that as well, so I am a busy little bee. Not just sitting in a corner whining all day long which is apparently what it looks like I do.

Surgery Update

2011-05-16T11:59:00.000-07:00

Lil Bill is back to normal! She is rolling around and seems to be feeling well. Poops still aren't quite on track, but we're getting there. She has though been waking, oh did I say waking, I mean SCREAMING bloody murder every moring at 5:30am on the dot. We go in her room and nothing seems to be wrong. So we aren't sure what is up with that. Not gonna lie, it kinda sucks. For all parties involved.
But she is back to rolling over and that means it must not be so tender anymore. She went to school today, but after getting Andi's opinion we decided to put a band aid on her neck incision. Although it is healing, it does look "a little bit yuck" as I was told. And I was also informed that Andi doesn't like people staring so we should just put a lightening mcqueen band aid on her neck. What in the world would I ever do with out my Andi Jane? My total surprise, did not want a baby at that time, Andi Jane.
Andrew was out of town this weekend and I had some issues with the word no and Andi. We really got into it Friday night and I didn't contol my temper (I hate when I let it get the best of me) I was so tired and the day was nothing but driving all around the state for Lily's dr apt and for work. It was just a "too much" day and it ended with us fighting and Andi told me she was going to move out and take Lily and Elmer with her. (Elmer the guinea pig) I was still mad at her, but it did soften my heart that Lily was coming with her. And a little sad she didn't want to take Oli. I almost had a great deal.
Anyway, we both apologized to each other and the rest of the weekend was so nice. Just hanging out at home, swimming, church. It ended with our small group meeting at our home and it was such an amazing time. So refreshing. So awesome. I just never understand questioning God when he makes himself so present. So so present.
So that's our update! All is well in the land of Nordy's. We've had some huge struggles, but we are moving forward and better for it.
Oh I also wanted to share Oli's end of the 5th week in ISR ... he is just doing amazing! He will graduate this week! So worth every penny. Watch for yourself. He is 2 years 3 months old!

Paging Bestie

2011-05-14T07:07:00.000-07:00

My friend Kim is amazing. Like hands down the best friend a girl can have. Will do anything she can for me, loyal as all hell and the funniest person I know.
So when she was 15 minutes from picking me up I texted her to see if she would stop at Walgreens and grab an enema for Lily. I had been giving her stool softeners to no end and nothing so we knew we needed to up the ante post surgery. I would like to share how the texting went, this of course is all with her permission. Right Kim?
Not editing, I do spell this bad.

Me: u know i hate to ask u this but is there anyway u can grab some enemas on the way? lily's really having a tough time. i'll $$ u back
Kim: shut it!!! i would love to! plain?
Me: no mint. lol i think plain
Kim: cool :)
Me: u need a bff cape today
Kim: hush! i love to help

She sounds like the bestest friend on the planet right? So willing to help. So loving :)
So when Kim shows up and in her hand is a big bag of plain m&m's we laughed and laughed and laughed. Like she will never live it down. It was awesome! She is pregnant and that baby girl calls all the shots and apparently those shots are filled with sugar.
She even went back to her phone to prove I for some reason wrote eminems .... but I didn't. Not sure why I would, lol. Oh it was so funny. I asked did you really think we were in dire need of m&m's... ahhhh it was so funny. I still laugh thinking about it. And the whole plain, no mint. I thought she was being a smart butt and she thought I was .... well... what did you think Kim? Oh man that was awesome.
The next morning Andrew held his tummy and said boy those m&m's worked.

Love you Kim!

Surgery Update

2011-05-10T07:13:00.000-07:00

We left the house at 5:45am. Got to the hospital around 6:25am. They got her back and into pre op quickly. And there we sat for 2 hours. Child life came in and brought us an Ipad. Andrew and I enjoyed it quite thoroughly…. I mean Lily did. FYI if anyone out there is thinking what gift could I get for lovely Kim and that darling Lily, well an Ipad would do.

They took her from us a little after 8:30am and we grabbed a bite to eat. When we made it back up to the waiting room they said they made the incision a little after 9:15am.
We sat there for about 2 hours and then we got to go into recovery. She looked so peaceful sleeping there. Every time she moved though she would cry. The nurse was telling us that they were getting her a room and we were staying. I said “no this is outpatient” and she said “no orders say she is staying”. I said we need to talk to the surgeon. We had yet to speak to anyone and I started thinking something went wrong during surgery since it was originally going to be outpatient. Surgeon eventually came in and said it was up to us to stay or not. Said everything went perfectly, they were able to keep it on the left side and she did well. We said if she is fine we will take her home and that is what we did. She slept pretty much all day long yesterday and she cried whenever we tried to move her even an inch. I let her lay all day, but today she is going to have to move some. Poor girl. She is smart though; she knows what hurts and refuses to move it.
My mom kept Oliver all day and Andi was at school so it was nice to have a restful day after such an eventful morning. When Andi came home she was so good and calm it was so nice. Today might not be as lovely. Hopefully Oli will be on his best behavior.
The tooth fairy didn’t find Andi at Grandma’s house AND didn’t come last night either. We are really hoping she comes today while Andi is at school because she is feeling quite left out. Oh that darn fairy.
We may send Lily to school on Thursday or Friday. We will see how she is doing. I was told they didn’t go under the muscle so it shouldn’t be too painful. We have an appointment to turn it on next Thursday the 19th. I am really praying this was all worth it.
We still don’t know who the neuro will be. I saw our neuro on our way to the cafeteria and told him he better hook us up with someone amazing.
Thanks for all the prayers, well wishes and concern. I am always so overwhelmed by the support we receive.

Tomorrow is surgery

2011-05-08T20:07:00.000-07:00

Today was a wonderful day filled with cards, gift cards for pampering, great family time at my parents home... picking up Oli's poop off Andi's carpet.... you know typical Mother's Day.
At the end of the night we had to say good-bye to Andi and Oliver who were sleeping at my parents, it was the best alternative since we have to be at the hospital by 6:30am tomorrow. My mom will be taking Oli to swim and Andi to school. But when Andi hugged Lily she started getting really emotional. She is so beyond her years. She has such a tender heart. I'm sure she was fine when we left but she always has a way of tugging my heart strings. At least she lost yet another tooth so anxiously waiting the tooth fairy will be a great deterrent. I just hope my mom... errrr I mean the tooth fairy remembers tonight ;)
Andrew and I were joking tonight after Lily got a massage, teeth brushed, toes and fingers clipped... "man can you imagine if Lily was our only kid? She'd be sparkling all the time" lol... I'm sure all parents think like this, right? I hope all those only kids out there are sparkling :)
We will update tomorrow when we get home.
Prayers please.

Ugh

2011-05-04T08:05:00.000-07:00

We got bumped! Surgery will now be Monday. I gotta be honest, I was bugged by this. I got this phone call AFTER I got the phone call saying our Neuro is moving to Oklahoma on May 25th(!?) and I got that call AFTER finding out we never should have done business with a friend. (I won't go into detail, but I know many have been there done that). The truth is a child was admitted to the ER and needs surgery today, hence the bump. Everything in me knows to have compassion for the child and family. I never want to think my child should be before any other. I know we went through a lot to make sure all the kids are figured out, but I also know my parents live down the road and are always willing to help (until those darn snowbirds leave all summer :)) and we'll have it all figured out next week. The appointment to turn it on stayed the same so the end result is not delayed. It was just a snowball of crap day. But we're fine. I'm fine. Now she is first of the day and won't be starving waiting all day for surgery. And now the little 2 get to sleep over at grandma and grandpa's Sunday night and I know how they are excited about that.
Knowing that God is the ultimate planner, I know to trust the schedule he designed. But I am allowed to gripe a bit right?
The good news is I am still taking the day off today!

UPDATE

2011-04-30T18:56:00.000-07:00

God is so good! This morning I found 2 pills that we were almost out of in a place that I swear I never put them, so she got her AM dose! Then the package came in todays mail even though they told me yesterday it probably wouldn't be here until Tuesday!
Amen!!!
So that is a huge stress removed from my shoulders.
Just wanted to post so no one was worrying about us over here :)
Happy weekend.

Ramblings of a stressed out mom

2011-04-30T06:51:00.000-07:00

I don't ever remember the Family Circus mom ever looking frazzled, but I always remember Cathy being frazzled and that seems odd to me. Cathy was over worked and I assume underpaid, but c'mon the Family Circus mom was by far even less underpaid. Maybe she did have a stressed out moment, I'm going off some pretty old memories, but I just wonder why she didn't have her hair more frazzled like Cathy's.
I feel like my hair is totally frazzled. I get like this from time to time. I know I am allowed and as long as I don't stay in this frazzled place I'll be just fine. But I am frazzled nonetheless. I'm just so tired of drives to Phoenix for so many Dr. appointments. I am tired of keeping up on Lily's meds which I knew I cut too close and now we may be a day or two without, one that isn't FDA approved that we get from Canada that I simply cannot drive to Walgreens and pay for a couple pills so I have to hold her over. In my defense I called just in time, they were having issues with the credit card and didn't get ordered until Monday am, should have been in the mail but I guess Easter Monday is a holiday in Canada? It should have been expressed mail but they didn't. There are several issues, but I should have called with plenty of time, not just in time. Story of my life. I have enough bigger guns to hold her over and I am sure she will be fine, but it still sucks, leaving me feeling less than and stressing over her.
Even with the right meds she is a mess so who knows what will happen. Yesterday was bad. The dogs barked, woke her up from a cat nap, scared her and she started screaming, then after about 5 min of uncontrollable screaming she went into a bad seizure. Then she was tried and crabby the rest of the evening. We had plans to go to a friends so we asked our caregiver to stay later and give her a quiet evening at home with out us loud folks and when we came home she was happy. Caregiver said they walked for almost an hour and she was so happy. The only reason they came back was it was getting dark. Thank God for such wonderful people working with Lily.
Next week Lily has a follow up on her afo's on Monday and Wednesday is surgery. But after surgery Lily and I will be staying at home resting. I am not sure how long she will need to stay home for but I am planning her being out Wed to Monday.
It's 7am on Saturday morning. I got up when Andrew's alarm went off at 5:45am. I decided to put a pot of coffee on and get up. I've enjoyed spending the hour in the quiet doing what I want to do. But right now I can hear Oli singing what sounds like twinkle twinkle, but not one word is clear but his tune says twinkle twinkle. I have no idea why people get those big kid beds out. Oli will be in that crib until I'm thinking high school. I know he can't take it to college so we'll have to remove it maybe junior year?
I came here to tell a few Andi stories but I guess my days are consumed with concern for Lily I got sidetracked, but since I promise ramblings in my title I might as well fulfill that promise.
I wanted to share that the other evening Andi says "now he's gonna get really sleepy!" in regards to Oli. Andrew and I both say "Why?!" in quite a panic, thinking we've got benadryl, we've got klonopin, dilantin, topamax, banzel, etc you name it we've got it, so of course we are nervous. She says "I made him warm milk!" "oh" we say with a sigh....
And I wanted to share one more and this isn't really a funny story it is just kind of what we deal with on a minute by minute basis with a child with a mind that runs faster than a cheetah.
I'm in the middle of a lecture about her guinea pig, Elmer. She loves him. Will sit on the couch with him for hours, but he's gonna be a Weekend with Bernie Elmer soon by her lack of feeding him and giving him water. So I am in the middle of my you really wanted Elmer, you promised to care for him, Andi you have to see his water low and fill it.....
"mom did you know kangaroo's don't drink water"
Silence.
And there you go as promised ... rambling of a stressed out mom. Off to get Oli who has now resorted to pushing the hand of the Build a Bear bunny who sings "all the single ladies" via Chipettes. Now he knows this will get him out.

FINALLY

2011-04-28T13:14:00.000-07:00

Finally we got the VNS implant surgery scheduled for Wed. May 4th. We gotta be there at 8:30am and my mom will help out with the other 2. It is outpatient, but no idea how long it will take considering the scar tissue and trying to make it work on the right side before moving to the left if necessary. I hate the thought of her going under and having to recover from a painful surgery, but I feel like we don't have many other options. It really sucks and for a total superficial reasons, I hate to think of having to cut her on her neck again, her scar is finally such a fine line that it sucks knowing it will be pink and noticeable again. Like I say over and over again if people are gonna stare at my girl she is going to look like a shining perfect angel. This is my superficial fears. I also have many real fears like there being difficulties, problems with anesthesia, painful recovery so no worries, I worry about everything. I am just silly enough to be honest about ALL of them.
I'm sure I will post before then, but keep us in your prayers please.
We had to stop horse therapy until her seizures get back under some sort of control and that totally sucks. She loves the horse and it just pisses me off seeing what her seizures take away from her. Please pray for seizure control for Lily.
Oh we took Lily today to re-do her EKG. Praying that comes back normal, we have to see cardio in June.
Tomorrow both girls have an eye doctor appointment.
Still waiting for a week with no dr. appointments. I may be waiting awhile.

My favorite?

2011-04-25T11:29:00.000-07:00

Tubes in, no cries, never signs of any discomfort. The nurses all loved him and even the ENT kept saying how cute he was. That's our boy! Almost one week later and we swear he is repeating us more often. The child talks, just no one knows what he is saying. I'm sure it'll all come. I'm not running for a speech eval yet. Just gonna see if it just happens. I'm thinking the tubes are gonna make a huge difference.
He is doing amazing in ISR (survival swim) I just can't believe this summer he will be swimming. He is only 2!
I followed up with the geneticists and Lily's labs were all good but the EKG was inconclusive because she was moving too much, Andrew said no way he was holding her down and she was not moving. It doesn't matter because I still have to bring her in on Thursday to take it again. Friday neuro surgeons office called me back to tell me that someone will be calling me on Monday (today) to finally schedule the VNS surgery. But we still have to wait 2 weeks after the surgery to turn the thing on. She is still really having a hard time with seizures. On Wednesday we were at horse therapy and she just wasn't acting herself. Really floppy, tired, not her usual self on the horse so I said let's stop, I take her off, load her up in the van and just minutes later she goes into a really big bad seizure and I just said thank you God she wasn't on the horse. Man.... you gotta trust your gut with your kids. There is me and her therapist on both sides of her, but those type of seizures are hard and I don't know, and I don't wanna know how we would have handled that situation. My Lily. Why is it always so rough for her? I mean seriously. She loves the horse. And now I am feeling like maybe we should stop while she is so unpredictable and uncontrolled. It's frustrating to love someone with every piece of your soul and watch her go through something you have absolutely no control over. And I have tried. Believe me I have tried to have control over these seizures, but it is the demon that we can never beat.
We had such a great weekend spending time with amazing friends on Saturday and my wonderful family yesterday on Easter and the evening had to end abruptly because Lily was just screaming. We have no idea why but just screaming. It is so sad to not know what is going on in her sweet little brain. My Lily girl.
It's funny the other day Andrew might have suggested that Oliver is my favorite and I had to laugh. Because as us mom's know no child is our favorite. But we can have favorite parts of each kid and I will stand by that until the day I die.
Andi is like a best friend. She is the one I love to shop with, I love seeing movies with her. I love just going out to eat with her. I love her heart and her spirit. I think she and I will always have a unique bond that I pray always keeps us close. I see Andi as a savior in a lot of ways. She is the only child we absolutely did not plan for. She came when I was scared to death to have another child. But when she came she said "Look out! I am here!" and my world became brighter. I was in such a dark place with Lily, so sad, so lost, so unforgiving for given a child so medically fragile and then boom this bright light blinded us and I became enamoured by her. She is everything I wish I am, speaks her mind, loves openly, admits when she is hurt and expects wrongs to be right. I inly see bright for her future and love to be with her every step of the way.
Oliver. Well he is my baby. I so wanted him. He cuddles me. He loves everyone, but I know he has a place in his heart just for me. His blond locks frame his face so perfectly and his hazel eyes that I have never known before just melt my heart. His quick smile, his ability to make a roomful of people laugh and not be able to say one word makes me breathless. He steals my heart every moment he can. He is laid back like his mama and I imagine he will be the peace maker as well.
And Lily. My first baby. Will always be my baby. The one who catapulted me into motherhood in fast forward. Yes we all experience sleepless nights, but not everyone spends those sleepless nights in and out of hospitals. She taught me motherhood can break your heart and mend your heart in a matter of minutes. She and I will always be who we were the day we met. She will always be my baby. My tenderness. My achy heart. I call her my Achilles heel and I mean that in the kindest way possible. She will always be my weakness in my strength. She is like hair to Sampson. With her I am strong but she also makes me weak. Does that even make sense? My world changed the day she was born and she will always be who made me the person I like so much more.
So no one is my favorite. If they were all drowning and I couldn't save them all I'd just drown right along with them. They are the air I breathe and loving them makes me remember God's grace and mercy.

2011-04-18T13:16:00.000-07:00

I don’t care if my nail polish isn’t perfect, well except I tried that crackle finish at a friends house and I gotta say it makes me look like a crack head, but I am still wearing it so I guess I don’t care that much. I don’t honestly care that there is marker all over our walls in our kitchen. I don’t care if there are finger prints on our sliding glass door. I think as long as our bathrooms are clean, the sink is empty and we all have clean underwear we are good. There are clothes piles everywhere. Clothes to resell on Ebay (you know when I have the time), clothes to give to friends/family with kids younger than mine, clothes to go to Goodwill, piles of clean clothes and always a laundry room filled with dirty clothes. I make no excuses for my house being messy. Never hoarders looking, but there are toys, there is equipment, kids chairs, etc everywhere because 1. Our home is less than 2000 sq ft and we have 5 people living there, along with 2 dogs, 1 cat and a guinea pig and 2. We have a lot of stuff, the things that come along with Lily is crazy. We try to keep diapers and wipes hidden aways, but once a month a company delivers 3 boxes of large diapers. We have 2 wheelchairs, a sitting tomato chair, an enormous walker… I think you are all getting the point. We are messy people, there are a lot of us and our home is small. But honestly none of this bothers me. Every single day of the week there is someone in our home that is not an official family member, but they feel like family. We have PT on Monday, OT and Lily’s care giver on Tuesdays, Wednesday I guess no one since I take Lily to Horse therapy, Thursday is caregiver day and Friday is caregiver and Music therapy. Sat we have a hab worker. So our house can never be Hoarders condition, but it always has things not where they are “supposed” to be (quotations because no one ever knows where supposed to go really is). Why air my dirty laundry (no pun intended.. ok yeah it was) because I wanted to get the word out there that I am not a control freak about most things. BUT when it comes for my kids I get incredibly anxious. Now babysitters that come and stay at the house I am fine with, we have schedules and pretty much the same babysitters so I am ok with that. But when I ask someone to take my kids somewhere, or do something I routinely do, I have issues.
Today I had to have Lily to get her AFO’s sized (by the way, I live for a week with not one single dr. apt. it has been soooo long!) but Oli had his swim lesson at 8:30am and Andrew had a meeting and my mom had a meeting. Ack! His lessons are important to be consistent and expensive to pay for and miss. He will be missing tomorrow for his tubes surgery so I did not want him missing today. My aunt (hi Gloria!) said she would watch him and take him. Ack! I got nervous. My amazing, lovely aunt whom I adore is more than capable of taking him to his swim lessons, yet I still got butterflies. I had to have everything out and ready for her. I gave her step by step instructions and I am sure she was rolling her eyes at me, but when I got a text that they found it no problem and he did awesome I had the hugest sigh of relief. And the same goes towards anyone taking the kids places for me. Not so much Andi when she goes places with her grandmas, but ask me the last time anyone but me took Lily to the Dr? Um when Andi was 2 weeks old. Ask me the next time someone other than me will take Lily to the Dr. um probably never. I had someone take Lily to horse therapy for me for awhile and it was just too stressful for it to be enjoyable for me. I’d just rather do it myself. So Andrew keeps mentioning us going on a little vacation and again my heart starts to palpitate. The thought of my parents or Andrew’s parents taking the kids places in the van stresses me out. Not because I fear something will happen to them, ok maybe a little, but more so that I know how much work it is to do and it bothers me to ask someone else to do it. It’s weird. If I know they will be hanging out at home, fine. Hanging out in Greer, fine. Going places… errr my heart! So yeah.. anyway, I have no point. I’m just rambling today. I am just thinking about everything I do for my kids and well specifically Lily and thinking of anyone else doing it makes me crazy. I pray the good Lord keeps me around a long time or else I will be haunting Andrew making sure he does everything the right way for those kids. And don’t even get me started on the thought of a step mom for them. That woman will be running for the hills when I get exorcist on her.
See this is my brain. Can you imagine my brain on drugs? I would be literally insane. I am never idle. My body never stops except to sleep and that is rare also. And if my body is idle, my brain certainly isn’t. Yes there probably is a nice little pill to correct this, but I’m not taking it. This is my pill, my fingers banging the keyboard.

Tomorrow is Oli’s tube surgery. I am calling Neuro surgeon probably tomorrow or Wednesday to see where we are at regarding Lily’s VNS surgery. I am gonna follow up with geneticists to see if labs and EKG were all good. And I am praying that once the VNS is in, we can go an entire month with out one single Dr. appointment, but knowing already we have a 2 week follow up with orthotics, eye dr for both girls next Friday I guess I am hoping maybe mid May will be Dr. less. You know April showers bring May flowers.. maybe April non stop Dr. appointments brings May with none. That may not be very poetic, but it gets to the point.

Pray for my boy tomorrow. He is a grump whenever sleep is involved so I am not looking forward to his grumpy butt when he comes out of the anesthesia.

And on a very serious note, please keep a family who lost their 2 year old son in a tragic accident yesterday in your prayers. We do not know the family personally but it is a close friend to a close friend of mine. The thought is unimaginable and overwhelming to think of. I’m praying for all the family and friends. I ask you all to do the same please. Sometimes life gets unmanageable and I have no idea why those things are allowed to happen, but our God is gracious and merciful and I pray there can be some kind of comfort in that.

Perspective

2011-04-15T10:17:00.000-07:00

Tuesday the Dr. said we can do one of two things, give his ears a couple months and see if the fluid goes away or do tubes. "Tubes!" I didn't even hesitate. We did the wait and see last year. He needed tubes last year. He'd probably be speaking a whole lot clearer had we gotten tubes last year. So 7:30am Tuesday (4/19) Oliver will get little plastic pieces in his ears and we look forward to hearing what he has to say.

ISR (survival swim) didn't continue to go as well. Tuesday he cried the whole time. Wednesday he cried when we pulled up to the house and kicked and screamed. Thursday he cried half the time (but Daddy came and his cries weren't as intense) and by the 2nd half when the pretty 5 year old came whose lesson is right after his, he immediately stopped crying and smiled for her and looked at her after each time he went under. (it starts so early!) Then today Andi was with us (long story about homework and missing a bus...) but he went right to the instructor, showed off with kicking, wanted to keep going to the bar and swam to the step and sat up on it. It was amazing! I am convinced in 4 weeks the boy will be swimming. What an amazing program. I was so nervous for this and honestly Wed I thought I don't think I can do this, he was just screaming for me, but today he acted like he was the star of the show. Just showing off, being hyper, just so excited with himself. I am such a proud mama!

This week has been so filled with ups and downs. Monday I was kinda taken back by Lily's appointment. I just didn't expect so much to be involved. EKG, referal to Cardio, sleep study rx, pulse ox, labs, it was a lot to take in. Even when you are used to things with your child not going right, that was still a lot to take in. Right before that appointment Andrew called to tell me we got a contract that we have been wanting/needing. It will change the company enormously. We will be more profitable, but also much busier! Great news! Dr. appointment not bad news but emotionally charging. Then shortly after that appointment I had conflict and I was left with hurt feelings that I have been churning and churning and it has left me angry. I've realized I, as I am sure most people, turn my hurt into anger because it feels better to be angry than hurt. But now I am just feeling sad. I am not a person who likes conflict. I actually do my best to avoid it at all costs and sometimes that is what gets me into conflict. But when I look at the big picture it isn't a big deal. I'm looking too close at the problem. Taking a step back and looking, really looking and realizing what is a big deal and it is Lily's dr. apt, getting her VNS scheduled, getting an appointment with cardio, getting the results from the blood test in, getting Oliver's tubes in, making sure Andi Jane feels special when she is the only one not going thru some type of medical ordeal, taking my family to a fun day event thrown by Lily's therapy company on Saturday and spending Sunday at church and at a family reunion of some sort. My marriage is what is important. My family is what is important. My health is important. I cannot keep running through my head what hurt my feelings. Life can hurt your feelings. I just needed to get perspective on things. That is what it is all about. Perspective. I had a great night last night with my MOPS mamas, we painted our nails and drank wine. It was a refreshing night that reminded me that life is not a bad thing, bad things can happen, but I have to keep my chin up and face it.

Face forward.
Perspective.

"We don't see things as they are, we see them as we are."
Anaïs Nin (1903 - 1977)

2011-04-11T16:05:00.000-07:00

What a day! Oli had his very first survival swim lesson and to be quite honest, I have been a nervous wreck over this thing. I thought they take your kid and hold them under water while the kick and scream… not really, but I thought it had to be something awful, but not willing to mess around with Oliver this summer and hearing how amazing the results are and winning a free week in a raffle I knew it was the right thing to do. I begged Andrew to go late to work and go with me. I just thought this was going to be awful. I had to fill out tons of paperwork, pay registration fees and it is a weekly cost for several weeks, it is a big deal. Anyway today was the day and the worse part was he can’t eat prior. He did awesome! He went right to the instructor, who has a heated pool and did everything she told him to do. The lesson is only 10 minutes and she helped him find the bar first time with assistance and then less and less. When she put him under the water he looked like he might cry but he looked over at us who were hooting and hollering for him like he just scored the winning touchdown for the Super Bowl and then he smiled a huge smile! The instructor was encouraged he will do just fine. She said she could tell he has a laid back attitude… yeah thanks to me. We left feeling so full of pride for our little boy!
Let’s see how this goes every single day for the 4-6 weeks!
After that we had a couple errands to run, somehow I seem to managed to embarrass myself and a stranger by getting my tampons in his groceries. Well I don’t think I did it, I think the conveyor belt did it but whatever.
Then we had to pick up Lily and take her to the Geneticists. It was one of those appointments I thought we’d be in and out, but that was silly. Her assistant came in to talk about the past year and I told her about the pass out episode in the stander. I also talked about being concerned she is having breath holding episodes, leg cramps, constipation, seizures out of control, ummm. I think that is it. She came in and wanted to go over everything. She is awesome. Like not just an awesome Dr, but seems like the mom you want to tell her all about your headache knowing she will be comforting and help it go away. She was not happy to hear all about her stuff going on and she wanted an EKG right away, they did it there, she wanted labs done, they did them right away. She wants a sleep study done to make sure she isn’t having apnea and she wants Lily to see a cardiologist. Sigh. We were there over 2 hours! But I felt like Lily was being well cared for. Her blood pressure is on the lower side, so I am praying all the cardio stuff is just being overcautious and it was probably because of the low blood pressure, like her old mama. They also want me to call the neuro surgeon’s office to see what the hold up on the VNS is. Hello.. I do all the time! So I guess we are gonna have to wait to hear back from everyone. I’m hopeful that all will be fine. I guess if it isn’t we’ll take that one step at a time like with everything else. I wanted to add Oliver was awesome during this appointment. We were in a small room for 2 hours and he was fine with a sink and gloves to entertain him.
I also wanted to add Andi Jane rode her bike last night without training wheels! Finally! I know! But she was so excited she had to call both sets of Grandparents, it was so cute.
Tomorrow Oli has his appointment with the Dr about his ears and hearing. I’m curious to see what the next step is going to be. I hope his swimming lessons don’t have to stop or be delayed…
I just have to keep in mind Romans 8:28
“And we know that in all things God works for the good of those who love him, who[a] have been called according to his purpose.”

Andi Jane Star Student!

2011-04-06T08:28:00.001-07:00

Andi has the fun week of being the Star Student!
Monday she brought in a star we decorated with pictures and drawings and quotes of things she has said.
Tuesday she brought in a bag of items that are special to her. I had to convince her that if she can't tell me what is so special about a PetShoppe gerbil she can't take it with her.
Today she brought in 2 of her favorite picture books and she choose My Friend is Sad and It's OK to be Different (both given to us by my awesome friend Marlene) I am also going in to volunteer today so that may make her day even better. I just pray I don't have to use glue.
Tomorrow is the day I send in a letter for her teacher to read to the class. I could write a funny story, tell something about Andi or write a poem. I choose poem. None of you writing experts judge me, this is for kindergartners.
And Friday we are skipping school all together and heading up north to Greer for a little getaway. It isn't the beach that I am craving, but the mountains are very cleansing. Here is my poem for our star child:

Andi Jane ordered on the 4th of July,
delivered on St Patricks Day,
we knew she’d change our family in a special way.
With big brown eyes and a smile that lights our world,
Andi Jane is some girl.
Whether she is helping with her special sister or changing the diaper of her baby brother, Andi Jane is always there to help her father and mother.
Andi loves her pet guinea pig Elmer and even has him sleep in his cage next to her.

Andi loves music, Justin Beiber and Spongebob too,
I bet you aren’t surprised she likes iCarly, are you?
Andi loves going to church and saying her prayers,
she loves reading books, with her there are many layers.
Andi loves kindergarten, Mrs. Barron and all her friends,
sometimes she wishes school would never end!
Andi was thrilled to be the star student this week,
thanks for making this week such a treat!

Ortho Clinic

2011-04-05T13:11:00.000-07:00

Lily's Ortho Clinc appointment was at 8:45am in downtown Phoenix. My only reaction is to laugh when I get those appointment cards in the mail. The ones with appointment times not selected by yours truly. But we load up, drop Andi off at my friends to take her to school, get Oli to the sitter, sit in traffic and make it 5 minutes late, stand in the check in line for 10 minutes making us now 15 minutes late. I had a total of 5 hours and 45 min of sleep the night before, Lily was up with leg cramps again, kids were staring at Lily in line and boy was I getting grumpy.
We went back to X-Rays pretty quickly and Lily sat like a big girl, I was proud. Then to the waiting room where we met Sally the OT, Mary the PT both who had to check on her wheelchair, Toby the dog came to visit, then Brian the resident. Finally at 10:15am in walks the Dr who immediately says "it's cold in here"
I of course agree seeing that anything under 80 is sweater weather for me.
"25 degrees, last time it was 32 degrees" he says
"I guess next time I'll bring my winter coat" I say
Blank stare
Blank stare
"Excuse me?" he asks
"25 degrees?" I reply
"Her spine 25 degrees, last time it as 32 degrees, this is a great thing"
"I thought we were still talking about the weather.... awesome!" I say
The Dr. laughs a laugh I assume he hasn't done in quite some time and replays what just went down. Like I wasn't there.
Then he pats me on the shoulder. I almost felt it was to say ahh nice blond girl.
I know he didn't really mean that. After that nonsense he blew me away with his words, talking about Rett Syndrome to the resident yet then explaining to him since her gene deletion is different then Rett get this... HE SAID... A DOCTOR SAID "all this means is we need to be more open minded"
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH I think this was the sound I heard in my ears and I think it sounds like what happens when they open the gates of heaven. Open minded? Really?!
I wanted to kiss him on the lips but I was still blushing from our previous conversation and never fully got my wits set back.
He said scoli is doing fine, her spine is flexible, keep doing what we are doing, hips are fine, look into some positing for bedtime to help with cramps. See you in 8 months (he doesn't want to expose her to X-Rays too often).
All happy news all the way around. Well except next time I will work on getting 6 hours of sleep next time. Hell maybe shoot for 7.
Oh by the way this is the Dr. we switched over to at the same clinic after the last guy kept saying to us "she'll never walk why does she need braces" after reading her chart and never touching her.
So that may help you understand why my heart sang songs of joy to such amazing news from an OPEN MINDED Doctor who doesn't read a diagnosis on a chart and immediately assume brace her, surgery in a few years. See you in 6 months.
Thank you Lord.

What now?

2011-04-04T10:46:00.000-07:00

We got a call from the school nurse today. They said Lily was in the stander and turned super pale and her lips were light blueish. Ack! The nurse said she was really sleepy when they brought her into her office and she had a hard time waking her up. But she did wake up and went back to class. I called the class room and they said she was resting in the beanbag chair and had a snack. Sigh. I don't know if this is a real problem or what. Honestly I am a fainter. I've done it more times then I could count. In my modeling days it was embarrassingly ridiculous. I've tumbled down concrete stairs, off a tree stump (in stilettos nonetheless), on a taped show (thank the Lord it wasn't live), in a studio, must I continue? It was a combo of heroin and anorexia.

Ok I know that was what some of you were thinking. It really was a combo of low sugar, low blood pressure and standing with locked knees. It is embarrassing and never helped get stereotype of me puking in the bathroom after munching off the craft services table though. But maybe just maybe could Lily not only take after my long skinny legs, but also my fainting issues? Could it possibly be something that simple? I mean put me in a stander for 5 minutes with my knees locked and I can promise you a show as well. So obviously I will mention this to her Dr. but I am hoping this is the case. I'm sure they will want a bunch of blood drawn, but since we do (well we freaking better) have the VNS surgery coming up I will just ask them to draw her blood then.
Sigh. I just love this beautiful girl and I am praying that she is a little weird like her mom and this has nothing to do with stupid CDKL5.

Andi Jane turns 6!

2011-03-31T09:08:00.000-07:00

My amazing friend Liz took these shots! If you are local please check her out, she is fabulous and says things like "don't fart!" to make a kid laugh! :) LIZ

Can you hear me now?

2011-03-30T07:57:00.000-07:00

Ok Oliver's hearing test update. Not as I thought. Apparently he has some fluid behind his right ear, which seems to be at every Dr. apt we have ever been to, which is causing him not to hear as clearly in that ear. At one point during the hearing test there was a higher pitched quiet but not whisper sound to his right that I was sitting there dying on the inside wanting to yell don't you hear that Oliver??!?! It wasn't horrible, that was the only really noticeable spot he did not hear, it seems like his left ear makes up for a lot of the loss of the right ear but now we have to follow up with the hearing specialist/ENT on Tuesday and go from there. Sigh. I just swore they would have said he hears just fine lady .... but that is what I get for swearing.
Next up Andi Jane. The diagnosis is still sinking in. I'm not quick to do anything right now but let her be. We are going to watch what she eats (as much as we can) and try to take this diagnosis one step at a time.
And Lily. Poor seizing Lily. This AM while having her sit on the floor before I got her in her chair for school she fell back with full force, banged her head and had a huge tonic clonic. Good morning to you sweet girl.... yesterday I called neuro surgeon asking what the heck is going on and guess the freak what?! The nurse from the other clinic, the one I called and got an attitude from telling me she hadn't yet dictated the notes and will send them when she can... NEVER SENT THEM! The nice lady I spoke with yesterday said there isn't much they can do without the notes, in other words insurance hasn't even been notified yet for approval. I let the lady know this isn't breast implants we are waiting for this is something we are praying that will give our daughter a better quality of life, these seizures are at an all time high (well not as bad as time leading up to brain surgery, but an all time 2nd high) she was very nice and said she would call the other nurse and get a fire lit under her. Well since I can't trust that is actually the case I will be on the phone yet again today. She also said our insurance is a quick one to deal with and this surgery should have been done weeks ago. It's in your hands God...you have your reasons.. I know you do. You have to! Because if it weren't I'd actually be even more pissed than I already am.
This just goes to prove NO ONE will care about your child like you. NO ONE! So be annoying as hell if you have to. If you want your child cared for this is the only way it will be done. Sigh.
I know the VNS will not be a cure all, but it has to help some. If not I am not sure what other road we will have to venture down. We can still try keto diet again but with a kid who only has a few life pleasures taking away one of their favorites is so tough to do. Sorry Lily no pudding, how about a butter pop?
She also has a follow up with Ortho next week and I am afraid scoliosis is getting worse. I don't want to hear we need to brace her. Pray for that one too please. Did I even need to ask you to pray for the VNS surgery?
Oh we got her glasses ordered! Now someone just needs to go to the mall to pick them up. Cute, pink Barbie glasses with transition lens. I'll post pictures when I take them. Along with Andi's birthday festivities....
And Oliver will start survival swim soon. Something I have been deathly nervous about. I just am such a wimp with my baby. These classes are expensive and time consuming and I am just so nervous to watch my baby learn to swim this way, but I don't want to spend all summer freaking out around the pool either. I need him able to get in the pool and feel comfortable. I'll keep you all posted on all areas.
Please keep us in prayers.
XOXO

Need to getaway?

2011-03-24T15:52:00.001-07:00

I posted on FB that I want a vacation and everyone seemed to 2nd, 3rd, 4th etc the idea. I see that I am not alone, when you have spring break for 2 whole weeks and you go nowhere then look on the social media sites and see people sharing vaca pictures it kinda bums you out. Is there a new word for that condition? I'm sure the Today show will explain this soon... do you suffer from social media vacation envy depression....
Whatever anyway, I so desire my family on the beach. Is that so much to ask? Actually right now, yeah. It is :(
Lily is just having ridiculous seizures. Yesterday I took the kids to open gym (2x in a week) and I was having Lily sit on the mats with her back against my legs while I stood and boom she dropped on her face and went into a full tonic clonic seizure. Then she was exhausted and fell asleep. Then she had another that evening at home on the floor. And that is just an addition to the myoclonic clusters she is having and of course the atonic drops that just come out of no where.
I'm so sick of seizures. I hate them. I can't get an answer from neuro surgeon if insurance has approved the VNS implant. I don't want to call and have him mess with the meds again. It never gets us anywhere. I hate how intense her seizures are and how intractable they are. I can take everything, the wheelchair, the diapering her, the lack of communication, everything, but why must we have to watch her body suffer all day long from these stupid seizures. Yes Andi Jane I said stupid, I know it is a bad word, but I'd like to say so much worse.
Oliver has his hearing test tomorrow. I'm nearly positive he can hear well, I was whispering behind him and he was grumpy and he'd say "NO!" when I whispered to him. He is grumpy often. But we have to have the hearing test if we want a speech eval. And I think he is ready for a speech eval. He seems to be picking up more words, but compared to where he *should* be and where he is is a huge difference. I know better than most about the *should's* and that is why we've gone this long without any concern from me, but now it is time to be proactive. When he can communicate with us all our lives will be better. I know he wants to say more than mine and no. Right? Well he is 2 maybe that is all he wants to say.
I'll update tomorrow. Someone send me some sunshine we can implant up my hiney I think I need it.

The pleasures of being a woman

2011-03-23T09:58:00.000-07:00

"I don't want to go to the Dr for that, it's embarrassing!" Me
"People get pregnant every day as a result of sex, that isn't embarrassing" Andrew
"Babies are cute, bacteria in your urethrae isn't cute!" Me
But I should have just gone yesterday. I get these dang UTI's like 2-3 times a year. They are a pain in the butt. Well.... not butt... but you have to go to a dr or in my case urgent care pay $60 then $20 for meds. But I should have gone yesterday but I just thought I could wash it away with lots of cranberry juice and water, but I woke up today feeling horrible! Went to urgent care at 8am (Andrew stayed with the kids so I could go alone being that it's spring break)turns out it started going into my kidneys, I had the largest amount of whatever they check for you and protein in my urine. Gross. Anyway, got some meds $80 later and now home with the kids who are currently hitting and fighting. Yes a 6 year old and 2 year old. Sigh.
Here is what I just heard " [screaming] when mommy and daddy get me a drum set I'm not sharing it with you!" Andi Jane... what is she talking about? What drum set? She's crazy.
We need to do something today, I can't stay home with them and listen to this all day.
I apparently find it embarrassing to go to a Dr for a UTI, but apparently not too embarrassed to share with the internet. Sweet.

Rainy Day

2011-03-21T22:20:00.000-07:00

It’s been a crappy day. It didn’t start that way. The kids are going on week 2 of spring break. I woke up at 7:30am and no one was up yet so I caught up on RHoOC then Andi Jane came in my room and said “good morning mama!” The perfect start to any day! Then she told me she didn’t pee in her undies (for the 3rd night in a row, a huge conquest!) and then I got out of bed to get the other two up, fed and dressed to take them all to open gym for a playgroup set up by our MOPs group. I was excited to take the kids there today, I thought it was a perfect outing and it was. It was fun watching Oli jump and play and Andi Jane had a great time. I even think Lily enjoyed me bouncing her on the soft mats. It was a grey rainy day and loading and unloading the kid’s sucks when it is raining, Lily just gets soaked going up and down on the slow lift. After the gym Andi Jane had her 6 year well check. Andi and Oli were fighting and yelling and absolutely out of control at the Dr. office. Like more than I have ever seen before in this type of place. It didn’t help that we were discussing Andi Jane and her ADHD diagnosis. It was embarrassing and exhausting. We aren’t medicating yet. I still need time to mill this over, but the diagnosis is pretty much set in stone now. We all filled out forms (Andrew and I separately and her teacher) and she scored highest in the attention deficit part but qualified enough to add the hyper activity as well. This bugs me. It bugs me a lot. I have heard people describe their ADHD kids as “special needs” kids and I would get so annoyed because comparing them to Lily was like comparing apples and steak. No comparison, but now honestly having a kid with this I get it, if I didn’t have Lily to compare her too, I think I would think I had it rough with Andi. I don’t think I’d ever call her special needs. High needs. Highly spirited. Out of control. Sure, but not special needs. But in all honestly she is special needs if you break down the word. The child is not typical. I know she isn’t. I never thought she was. But to actually hear that some of her actions are out of her control bothers me. Makes me sad. Makes me think I was too stressed with her while pregnant. Makes me think I should do more or less. I don’t know. I’m tired. I’m tired of worrying. I don’t want another kid with a brain/mood altering drug. I don’t want this. I love my kids so much and it is exhausting to stress so much about them. Now I need to look into if Andi needs an IEP. The pediatrician also suggested family counseling, to help us with behavior plans. To help her with self esteem issues. Not that she has any problems in that area, but he said it could come up later. Andrew and I just barely graduated marriage counseling, now we gotta do family? Sigh…
Oli has his hearing testing on Friday. I’m sure he is fine, but his lack of vocabulary is starting to worry me. And most likely he is fine, but finding out now is the best thing I can do for him. For us.
Lily is continuing to have her seizures. She had a big one on Saturday night. Freakishly big. She continues to be constipated. She continues to have her crabby spells.
So after this day I came home deflated. Sad. Just wanting to lie down. I had an insane head ache and I just wanted to rest. I decided to spend some time in a work book I’m doing and spend some time in prayer. Tears were flowing. Flowing from stress. From heart break. From the whole lot the past 6-8 months have brought. My head ache. Then I sucked it up and put my smile back on and went out to face my life, but then I got on facebook and read that a sweet little 4 year old in our CDKL5 family had lost her life on March 16th and it sucker punched me. I don’t know the details but I know a little girl with the same disorder as our Lily lost her life at only 4 years old. I’m shocked and feeling so guilty for pouting and whining about my day when I saw what another family is going through. Life always has a way of putting things in perspective. I love my family. I love my life. Yes it isn’t easy. Yes we got soaked in the rain. Yes one of my kids can’t control her self at times. Yes my 2 year old has the vocabulary of a 16 month old. Yes Lily has seizures. Yes she has constipation issues. Yes life is hard. But it’s our life and we have to live it every day like we don’t know what the next day will bring. So I finished my night playing a game with Andi. Giving Lily a bath and lotion rub down and singing and rocking Oli. Giving them all an extra moment of my time instead of counting the minutes until I put them down. Instead of saying we’ll play tomorrow. I did it tonight. And when I close down my laptop I will pray for the family that has to endure another day of not having their sweet daughter to care for and love. And that is what I will remember when I feel like getting the violin out and playing me another sad song.

Andi Jane Turns 6!

2011-03-16T23:38:00.000-07:00

March 17th 2005 we had no idea what we were heading for..... these past years have been filled with lots of hugs, lots of kisses, lots of smiles and lots of crying and tantrums (from her and me). She beams with a light that only she can shine and it came at a moment when we needed it the most. Loving this smart, funny, clever, compassionate little girl has brought us so much joy and we feel privileged to be the ones who are shaping her future. Thank you God for this precious gift.
Andi Jane YOU are amazing and YOU shine like a star. I pray that your dreams come true and your light continues to shine bright.
We adore you!
Love Mama and Daddy

Update of No Sort

2011-03-15T13:06:00.000-07:00

I'm updating with nothing. I've got nothing on the VNS yet. But I am taking Lily to get sealant on her teeth tomorrow at 8am. Yippy! I'm praying for another peaceful experience like last time. At least Grandma and Grandpa N are here and I can just get up with Sissy Sue and leave the house probably before anyone else even wakes up. I'm on a no sleep crusade right now anyway so it really won't bother me none. I do the birthday video for my loves every birthday and Andi's seem like I use the same pictures over and over again while just adding the most recent years photos so in an effort to not do that this time I am staying up way too late and only half done. I am sure it'll be another late night tonight and sometimes I wonder why I do this every year. I am such a sentimental sap, but I like to think come Andi's 30th birthday and she is just going on her first date we would like to have all this prepared for her wedding you know when she is 35. ;)
Whatever. The kids love it and when I say the kids, I mean Andi. Since she at the moment is the only one who can let me know they like it. She has a lot of opinions in as what to put into her video and I can't imagine if she woke up on March 17th and there was no video for her. I think she'd sell me on Craigslist. But I do love her so. It will be evident in the songs I chose this year, that you will have to wait to see on Thursday as well. I think every year I just get sappier and loose my sarcastic edge and it is rather sad. Makes me wanna cry. Get it?
Ok never mind.
Here's my update. I don't have one.
Oh I did have a break in my lent vow and that is only because Saturday God wanted me to chill out so he gave me a 102.5 fever and nothing felt ok in my tummy but 7-up, but I hardly consider that cheating because I don't even like 7-up on a good day. Now had I blamed the fever and got myself a Dr. Pepper with crushed ice, vanilla and cherry syrup, maybe you could call me out. But no. I have not done that.
We are enjoying Andrew's parents. It is so nice to have more adult than children for once. You feel you might have the upper hand... might... but seriously Grandma helps me so much it is hard to going back to regular life when they leave, so it has been nice. And high five to God who let me get sick while we had family in town who let me hibernate in my room the whole time. How often does that happen to us moms? Never?!
Oh we started hippo therapy back up finally. Yay. She went last Wednesday and it was just like riding a bike for her. Well you get what I mean. I guess it was just like riding a horse for her. She was great no matter how sucky her seizures have been she rocked it. We went yesterday and we go tomorrow for a make up. She's literally back in the saddle again.
Anyway.... this post was like a Seinfeld episode. Just minus the million per episode. Darn.

Not looking good...

2011-03-09T12:04:00.000-08:00

Oh gosh I am so annoyed! I called Neuro Surgeon's nurse to see where we are at regarding insurance approval and she said well I haven't even done the dictations from last weeks appointment, she said she was not the person who handles the insurance approvals but they take several weeks and not a quick process. Ugh. I didn't like her much. I did get the number to the lady at the office and will give her a call on Friday to make sure she got her dictation notes which they need in order to make the insurance approval request . I know the approval does not take that long if you are insistent and maybe I will do it instead. Anyway, to think the surgery will take place next week will not happen. I was so hoping to do it while Andrew's parents were in town to alleviate some stress regarding the other kids, but even despite my best efforts it is not gonna happen. Oh well. I know I am not in charge, so I will just relax and believe it will all fall in place as needed and we will be just fine.

In other news the most relentless child on the planet willed another tooth out.

And Oliver tried to cut his penis off last night with play dough scissors. All the while it didn't cut any skin, he sure pinched himself pretty badly. This was a popular post on facebook and one of my favorite responses was... did you tell him he may need that later in life? Lol.. gotta love kids.

Giving it up

2011-03-08T13:23:00.001-08:00

I like to give things up for lent. Let me go back. I give things up for lent, something I really like. I do not like giving said things up. And often someone will say why are you giving up something for lent? You're not Catholic. I say, I know. And they follow up with then why do you do that. I guess it is as simple as this. **disclaimer Jesus will be discussed** I believe over 2000 years ago God gave his one and only son. I have one and only son and no one will take him from my arms. But God gave us his. His one and only son. Then his son, Jesus gave his life. HIS LIFE. And not by a shot to the heart. He was crucified. He was ridiculed, beaten, hung to a cross and left for dead. He gave up HIS LIFE for our salvation. How do you feel at the eye doctor and they are about to blow air in your eye? Apprehensive? Do you jump before they even puff? I know I do. Or right before you get your blood drawn do you tense up, and not because they told you so? When we know we are about to hbe hurt we have fear. Jesus knew he was going to be crucified and went along with it, for us. Can you imagine? Even for one second? And all for us. For me. So when someone says why would you give something up for lent if you aren't Catholic, I simply say well God gave up a whole lot for me the least I can do is give up....... soda. Yes soda.
And let me just give an example of my life with soda. Just about every day starts with an $0.86 32 oz Dr. Pepper from Circle K with crushed ice and cherry and vanilla syrup. And no diet. Full sugar Dr. Pepper with full sugar syrups. Pretty much every day. That is the morning, then I will have a soda with lunch. Yes. Typically never more than 2. But never less than 1. So giving up soda for the next 46 days is a bit of a sacrifice and no it isn't life changing... well maybe for my health a little, but it is a small sacrifice. But every morning I don't stop and get my soda I think I will remember a little clearer what mighty sacrifice was given up for me.

Well here's to my fat Tuesday... I had 2 today

Daddy/Daughter Dance

2011-03-07T11:26:00.000-08:00

No detail left unturned, it was a spectacular night and I was so impressed by the hard work these amazing women did for this special night. I did not have my camera at the event, but I did take pictures before they left.
Andi stayed back with me while I took decorations down, it was pretty late when we were driving home and she said to me "while me and dad were doing the robot I told him this was the bestest night ever!"
I think they had a great night!

Update

2011-03-04T09:24:00.000-08:00

Well as long as we can get the insurance to not be a pain in the hiney we can do the VNS surgery during spring break! The neuro surgeon (who was very nice btw) said she'll go into Lily's previous site and see if they can't use the nerve above and stay on the same side. She said with the scar tissue it is a longer procedure, but nothing too risky, they aren't messing with the wires around the previous nerves. It will be an outpatient surgery and as long as all goes well she should be up and at em (as much as Lily can be) in a few days.
I let her know we'd like this done ASAP and she was going to let her nurse know that so she works on insurance approvals. I will keep you all posted.
Tonight is the daddy/daughter sweetheart dance at church and Andrew is taking the girls, Grandma is taking Oli and I will be serving at the dance and we are all so excited! The girls are going to look so beautiful and daddy is pretty excited! This is such a special opportunity and I'm so glad to have wonderful people in our lives who put forward such an effort to make these things possible! Pictures to follow!
Saturday is my dear dear friends wedding and Andi's first sleep over/slumber birthday party for a friend from church. Sunday we are going to the Renaissance festival after church which happens to pretty much be one of my most favorite days of the year. So to say I am looking forward to this weekend would be a mild understatement. Ha Zaar!
Pictures of all things to follow!!!
Happy weekend friends!

Cancellation List Woot Woot

2011-03-02T12:24:00.000-08:00

At my request we were placed on the cancellation list for the neuro surgeon and sure enough someone cancelled. Tomorrow she is going in at 8:45am and I am hoping and praying I can finagle my way into getting the VNS scheduled during our long spring break, the girls are off March 11-29 (!) modified year round schedule, and grandma and grandpa Nothdurft will be here a lot of this month so it would be optimal to get this done during this time, besides the child needs this thing back in her. I know it isn't a cure all, but I honestly believe it helped her when it was on and working. So we see nuero surgeon just to see her and schedule the surgery, nothing really will happen at this appointment, just another way for me to use up a bunch of gas in our gas hog van. Oh and to experience the joys of rush hour traffic in downtown Phoenix.
Wish us luck, say a prayer, send positive vibes that I am able to get this thing scheduled sooner rather than later.

Twitter This

2011-02-25T07:16:00.000-08:00

I started on twitter years back, when it pretty much first came about but I never had friends do it with me and never really "caught on" so I quit. and then I thought I was cool for not twittering... but it got a hold on me again. I am not trying to get a million followers but I do want some participation.
For all us parents know, parenting is hard work. Like the hardest, but of course most important job we will ever have. But there are days when your car keys end up in the trash can, your phone in the toilet and you fight over them just eating a bite of oatmeal and this is all before 9am. Sometimes the only pleasure in parenting is sharing the funny things they say or do via the internet. I mean seriously sometimes I want to sell my kids on the black market, but then they will do something that makes me just stop and laugh and it makes me realize I don't want to sell them.. until later of course.
So if you twitter, or if you don't, start. Just everytime you share something your child just did do this #mychildjust and finish the sentence. I would love to hear all the other stories out there of sharpie on leather couches, we all know it makes us feel better knowing someones kid out there is worse than our own ;) (isn't that why s@# my kids ruin is so popular?)
So if you have a baby who just farted or a tween who just proclaimed her love for justin beiber during mass, or if you have a 35 year old who still lives at home and you think they are pretty funny too.... share!
Remember if you twitter #mychildjust

All about the teeth

2011-02-23T15:10:00.000-08:00

Andi Jane is a little late to the game and she knows it for sure. She has been dying to have a loose tooth and then at the dentist we saw the one behind was coming before the other was leaving and the dentist told her to get wiggling, she sure did! She has been wiggling this tooth non stop! It was finally wobbly and she'd ask Andrew and I to make it looser. Last night I was at church and on my way home I get a call that she got it out. "It wasn't even that loose!" I say, "I know but she was so determined to get it out she actually tied a string around it and slammed the door twice THEN it was super wiggly so I just plucked it out with tweezers" he said (I didn't even need to express my annoyance at knowing the fact they found my good tweezers for this chore) I got home and thank goodness I have the tooth fairy on speed dial! (and actually had a few bucks in my wallet considering it was 9pm at night!) I found a pretty black and silver bag I had, we put a note and $3 in it and tucked it under her pillow. Andrew thought we should give her $10 since she worked so hard to get it out.. I said no. What is up with men and wanting to give the kids so much money!?
So here she is with all her pride and glory...

And today Lily had a dentist appointment where she had to get a filling. I was very nervous for this appointment, I even had (well I always have it, we just have it for seizures, not usually for the dentist) klonopin in her back pack just in case she couldn't handle it. But the crazy thing was I put her in the chair, the dentist, who is amazing, talked calmly to Lily, and told her everything she was going to do. Lily made amazing eye contact with her and kept looking at all of us and at the bright light. She loved the suction thingy (which we already knew from cleanings) and she sat totally still with the prop in her mouth. She was so calm it was weird! They didn't numb her, she was going to see how she handled the drill, I said we would know if she were uncomfortable but the girl never even budged. I was so proud of her. The dentist said she did so well she wants to apply sealant on her teeth at a next appointment. She said if she will sit still it will be the best thing for her teeth.

So I am a proud mom today of two beautiful girls with awesome teeth! :) I just cannot believe my girls are getting so old. Can someone find that pause button please? I've been asking for 2 years for it. If we don't find it soon we will be going to the orthodontist before we know it.

Neuro Surgeon

2011-02-22T09:11:00.000-08:00

I got the appointment for the consult with Neuro Surgeon... March 23rd. Gahhhh!
I called Neuro and said hey this doesn't really work with the amount of seizures she is having. They sent an email to see if they could get us in any sooner and asked to put us on cancellation list, but as of now the appointment still stands. So annoying. Consult will be for 2 minutes and then we will have to schedule the surgery for I'm sure weeks to a month out from there. Neuro told me he was sure I could teach the Neuro Surgeon a thing or two, not sure if that was a compliment to all my brain knowledge or a jab at a young not too bright neuro surgeon, is that even possible, well with the exception of Derick Sheppards sister on Private Practice, are we really supposed to believe she is a neuro surgeon?! Either way I am not too thrilled.
I have a massive headache, Lily was up from 3am on last night. She was just doing her loud Lily talk and on and off crying with nothing wrong with her. It is odd there can literally be a brawl outside involving police sirens and ambulances and our entire household sleeps through it, yet Lily talks all hours of the night and I am wide awake. Anyway she is still having one big seizure a day almost on the 4pm hour every day. In addition to all the jerks and drops. It is odd and makes her crabby. We haven't seen any changes in her gluten free diet.
She still in constipated. She is now on antibiotics for a runny nose that is just green and non stop since mid January.
Sigh.... if anyone finds my sense of humor can you send it to me? I will pay for shipping. Even willing to pay a reward.
My last posts have just sucked. I know. My writings suck. My attitude sucks. Working on it. Hang with me.

Advice

2011-02-20T14:33:00.000-08:00

You know when you go to a baby shower and you have to put down a piece of advice for the new mama and we all rack our brains for great advice, we want something encouraging so not to scare the new mom, we want something sentimental so we make the poor woman already crying on a dime cry harder, but we also want it to be useful. So here is my advice from now on. So if any of you invite me to your shower this is what I will say...

Kids spill things. All the time. They will spill on your laptop. Your new top right before heading out the door. They will spill all over your lap while at chic fil a. They will spill all over your cell phone. And spill proof sippy's are a lie. It is how you handle that spill that proves who you are as a parent. If your first instinct is to yell, scream and freak out. Well that's your prerogative, but next time your hands are too full and you accidentally spill your drink I hope someone is over your shoulder telling you what all you just ruined.

I yelled at Andi after she spilled a soda all over the hospital floor. It was a few years back and I had been there for days with Lily, we went to the cafeteria while Andrew sat with Lily, I was so stressed that the minute she spilled it I got mad. A stranger was standing by and came over to help and told me it was just an accident and while it pissed me off at the time they told me that, they were right. It was out of character of me, it was a stressful time, but it was just an accident. How many times have I dropped something, spilled something, etc who yelled at me? Since then I have been keeping my cool when things, annoying little things happen and it isn't something I proclaimed to the world, it was something I noticed and corrected in myself, but last week Oliver and I were at Chic Fil A and he was on my lap messing with his soda and the next thing I knew the entire freezing contents were on my lap and what I said was "that was cold!" and then proceeded to clean it up. Thankfully I was at the 5 star of fast food and I was given assistance in no time at all. But the funny thing was a mom of 2 little boys and one on the way said to me, "Wow you handled that amazing! All you said was it was cold" and I said "because it was!" I felt proud though that my reaction was handled and recognized by a fellow mom.

So if I'm coming to your shower I will condense it to, kids are messy, don't freak out.

Daddy's Christmas Gift

2011-02-19T14:55:00.000-08:00

I bought Andrew a ride along in a Nascar at PIR for Christmas and this was the weekend he could cash it in. Friday we took a long lunch from work and drove the 45 minute drive to the other side of the state and he signed his life away, got suited up and got to go for the ride of his life! He loved every minute and of course now he wants to drive for his next gift. Quite a difference in price there buddy! I told him it was his birthday gift too since his birthday is Saturday the 26th but not sure if that will fly ;)

Anyway here are some photos of our fun long lunch date which was followed with a yummy Mexican lunch, it was a fun day:

Kindergarten Fun!

2011-02-11T13:06:00.000-08:00

I help out in Andi's class one hour a month. Yes one hour a month is plenty enough time for me. The kids get glue everywhere. Even with glue sticks! The teacher from across the room always says to my table that everyone is too loud and I even got in trouble for helping a kid finish up. Apparently the kids have to do their own work. Who knew. I am just way too soft to work with 25 6 year olds.
Anyway I always get to hear the most interesting things during that hour that makes up for the glue, the loud, and the getting in trouble.
Back in July I had a couple hot pink extentions put in my hair and I liked it so much I had my most awesome hair man dye the whole bottom of my hair pink in August.
http://www.flickr.com/photos/nordyswifey/4952914315/in/set-72157624867792084/
That is a picture of us at Splash for a Cure and a great example of my hair color :)

So anyway not one but two kids in two seperate groups ask me where my pink hair went. This was after they asked me in January and December AND November...I told them it washed out. They said ahh man. I wonder if that makes me the cool mom?
Another thing I found funny was Andi's group was at my table and Andi said "T kissed J!" And I said "what? kissing!" and little J says to me "well Andi kissed me!" I looked at her and asked if that was true and she smiled. Sigh...
Then a sadder moment was when I asked a little guy how he was doing today he said "well my parents got kind of rough with each other last night" I asked him if everything is ok and he said it was. I didn't really know where to go from there. My heart was sad for him.
So last night when Andi made fun of us kissing (Andrew and I) I said Andi do you want parents that kiss or parents that fight? And she of course said kiss, but I just have to say I am so happy that even though the school year started out with lots of fighting and unknowing, here we are getting made fun of for kissing. Mwah!
Speaking of that we are going on a date tonight thanks to my parents they are keeping all 3 for a sleep over and we are going to celebrate Valentines Day a few days early. <3 (that makes a heart on facebook if you're wondering)

Glad we didn't have 4

2011-02-10T14:53:00.001-08:00

I will start with Lily who had a neuro appointment yesterday. She weighed in at a whopping 59 lbs! I just had my girls with me and that made the appointment so much more lovely. Love Oli, don't love Oli in a Dr. office. Lily had a seizure in the parking lot then one drop while seeing neuro and a nice big one on the way home in the van which then caused her to vomit all over herself and her wheelchair and it was so sad because she then just passed out, the ride was 45 minutes :( she had to sit with her puke all over her and Andi and I had to roll the windows down.
Neuro decided to go up aggressively on Sabril and Clobzam and hopefully we will be able to discontinue the Banzel. We also decided to replace VNS on the right side. It was originally on the left side, when they went to replace the battery the cords weren't working so they just removed the battery and closed her. I really think the VNS did help and we want it back in. Neuro said it is perfectly fine to put it on the right side and so we are going to go ahead with that, I am hoping we can do that during spring break.
Lily is still gluten free and except for my diminishing bank account I haven't seen any changes in her at all. Positive or negative. We will continue for 2 more months and then if we still see no changes she can go back to oatmeal and peanut butter and jelly on real bread. But always willing to try anything for our girl.
I will now move on to Andi who at the Dr the other weighed in at 58 lbs and 50". She is only a pound less than Lily and about maybe 4 inches shorter. Either Andi is a giant or Lily is really slowing down in growing (probably both). It is nice that she is knowing we have to care for her completely but I can't help but wonder if it is because of CDKL5, or she just has slowed down. She is quite average for her age and she used to be 100% height and weight for her first 6 years then she really slowed down. Anywho, we are on Andi Jane. She was at the Dr because we are concerned she has ADHD. Her Dr has already voiced his opinion on her last year but now that it is causing a problem in school I want to look into it more in depth. Her teacher has made note of her inability to sit still to an extreme as well as her social issues and staying on task all no bueno. Not sure what our plans will be from diagnosis on, but you can be certain I won't do anything without doing my research.
And onto our boy. Oliver had his 2 year well check on Monday and came in at a whopping 25 lbs and 36". He is quite the string bean but I have to say I am glad his 12% and 97% percentiles weren't the opposite, he'd be an oopalupa. First thing Dr noticed was his raging ear infection in one ear and pretty bad infection in the other. Oops. I knew he wasn't sleeping well. Just thought it was a cold. Then we go on about vocab. How many words he asks uh.. 10? Maybe 15? Is that ok? Not really he says. He told me not to worry worry, but be concerned and we will follow up with an ear re-check and then some hearing tests. I'm not worried he is autistic, but I am concerned he has fluid in his ears as he did all last year and then when I finally took him to the ENT it was summer and he was all clear. But I am worried he has had fluid for the most part of his little life and his hearing isn't right. So I guess we will continue to follow up with that and I will continue to update.
I told our pediatrician, I wonder if we had a 4th what the heck he or she would have?!
I call Andrew to tell him this news and he says what the heck is wrong with our kids? My sentiments exactly. So glad we closed up shop. My heart can't take anymore worry over these precious little people.
If you can spare a prayer for us it would be appreciated. I know I kept the update on the light side, but I do have genuine worry for each of my kids and I know Lily's is the most severe concern and most life threatening, but I want Andi to do well in school and flourish as an awesome spirited child, not hindered by her overactive brain and we would love to hear Oli say more than hot, truck, football and dada. He is 2 now and he barely says anything clearly let alone puts words together. So pray for our mommy and daddy hearts that fill with worry. Pray for the kids that we make the right choices where all their well beings are concerned. Pray God's will always takes us where his Grace can protect us.

Oli's 2 year Pictures!

2011-02-07T07:36:00.001-08:00

Not only is my good friend Liz beautiful, she is an incredible photographer! She took Oli's 2 year pictures. He rarely even looked towards the camera let alone smile at it, but I think they turned out pretty incredible and since I insisted in jumping in a few, I feel blessed to have these cherished pictures to last a lifetime. I am hoping to do the same with both the girls this year for their birthdays. As us moms know rarely do we ever get in pictures with our kids, why? Because we are always the one behind the camera, knowing what moments we want to treasure. It was so nice to be in front of the camera with my little man.

Oliver Isaac Steven turns 2!

2011-02-05T06:22:00.000-08:00

at 12:13am on feb 5th 2009 he completed our family with his calm demeanor. his gentle heart. his quick temper. i couldn't imagine being a mom to a boy and now i can't imagine not being his mom. love you oli!

Weekend Update with Me

2011-02-01T07:35:00.000-08:00

Back in September I wanted to escape what the big bad wolf did. I didn’t want a staring role in our family anymore; I was willing to settle for character actor. I just needed out without really checking out. So I took a job at a bar/grill as a server. I hadn’t waited a table in almost 10 years. We did need the money, but most of all I needed something to distract me from what my life had turned into. And every weekend that is where I went. And in the beginning I really enjoyed it. The money really is great, and it was fun to feel “young”. When the place was swamped it was nice to have the only thoughts of who’s drinking what beer. But then my toe nail fell off. I dreaded leaving my family. I started finding reasons why I couldn’t work certain days and I started to want to be back home. Yes seriously my big toe fell off after turning black from 3 days of 8 hour shifts in too tight of shoes. My hands also look awful. After a long shift my feet will cramp when I stretch out while sleeping. I will say “no no no..” and jump out of bed to get the cramp to go away. Friday night I didn’t get home until 1:30am and had to be up with all the kids and have them to church by 8am for Andi’s basketball game. I just knew I was done. My boss who is a single owner of the place with her hubby is awesome. She was amazing to work for! So understanding and was totally understanding when I said I couldn’t do it anymore. They are letting me stay on as a back up which will be nice so I can come in from time to time. I enjoyed all my co workers and the regulars. It really is a cool place to work for and go to so part of me is sad to stop working, but other parts of me are excited to be able to pick up and go up north again with out needing weeks advance notice to take off. I’m excited to be able to put my kids to bed. Just to hang out at night again. Things I have been really missing. So this Sunday, super bowl Sunday will be my last day. I am ready for it to be over. I’m feeling so tired. So old.

My parents were so awesome to take the kids all day Saturday so Andrew and I could do some running around and I could take a nap! Oh how amazing it was! Then we went to my good friend’s 29^th birthday party (no really it really was her 29^th, her first one) she made homemade sushi and martinis… she rocks! So we had a date day and night! Then Sunday I went to see a play called RESPECT with my mom, sister, aunt, cousins, etc, and it was awesome! Oh my goodness, ladies you have to see this! It was so much fun! After that I came home and we took the kids for a walk down to the neighborhood basketball court and we all played til the sun started to set. Andrew and I even ran 2 suicides, voluntarily! Man I was sore the next day, but I think we need to do that more often.

So the weekend started out a rough, long exhausting night, the place was slammed! But it ended up being pretty much one the best weekends I have had in a long time!

Just wanted to add...

2011-01-28T12:01:00.000-08:00

*JUST* because there may be no
Once Upon A Time
that does not mean there can't be a
Happily Ever After....

Once Upon a Time

2011-01-27T13:43:00.000-08:00

I called University of Chicago's genetic lab department because I wanted to know why Lily's diagnosis was so plain. A deletion involving exon 1 on her CDKL5 gene. Most other CDKL5 families have a far more intricate diagnosis and I was jealous. OK probably wrong word choice, but I did want to know more than I thought I was being told. Lily's pediatrician (whom I called first) said he had no more information than I did and maybe try calling them. Knowing I would they gave me the number. I left a message and just a few hours later the director if clinical services and education called me! I was so impressed and stumbling for the proper words to use. "Yes ahem, I was only curious to know if you could perhaps be so kind...." yeah right, I said ok all these other families I know have these crazy diagnosis with letters and numbers and periods Lily doesn't, what's up with that?

She explains to me most children with a CDKL5 infliction have a mutation. She described to me that if each gene was like a book there are chapters and pages. When a child has a mutation it is like they are missing a chapter or pages and those can be pinpointed very specifically, but when a child has a deletion on that book it is missing an entire chapter and with Lily's deletion on exon 1 it kinda means there is no Once Upon a Time. Meaning the book never even starts. This made me sad. She was incredibly kind and informative, she was not being hurtful she was just simply explaining to me an almost impossible subject (genetics) in very plain terms. I was very grateful for her explanation. But I had to follow up with "is this why Lily seems to be more severe than a lot of the other kids" and she simply stated "yes".

That kinda sucked.

Seizures can go suck it

2011-01-26T12:42:00.000-08:00

Yes that is my title and I mean it. Suck it seizures.
Last Tues we went gluten free with Lily, not for seizures sake but for overall health and hoping for a little more awareness/alertness (and possibly help with tummy troubles). It is going well, it just costs a few more dollars and she pretty much eats all the same things. But I have been noticing an increase in seizures and then they just went haywire. I am not correlating the seizures with the gluten free, I am just sharing our timeline in what is going on in Lily's world. Anyway they were really increasing, then we went up to Greer for the weekend and they started hitting her hard. Big ones, tonic clonics on top of the myoclonic clusters and atonic drops. I figured it was the elevation and just had her relax all weekend, like we all did. But then on the ride home they were every hour and then they continued at home. She does have a cold, but never a fever. I called neuro Monday and he upped her Sabril even more which she takes in addition to her other 2 meds (sigh) and now we wait until Feb 9th for her appointment with him. I admit she is doing better, but it is usually a temporary fix when this happens. Unfortunately there aren't a whole lot of choices. We could explore putting a VNS on her other side since her previous one kicked the bucket and ruined her right side or re-visit keto. I hated her on keto, but I hate seizures more so I'm feeling a bit torn as to what to do. I have been able to worry less about her and her overall health and it has been nice, but when her seizures get like this it makes me worry. Worry about her at bedtime mostly. We have a camera on her all night, but still.
And to add to the mommy worry, we are having struggles with Andi Jane. We all know she is a high energy child and it has always been a concern in the back of my mind that it is more than typical hyperness. Lately she has been coming home with bad notes and her report card was poor in behavior areas, frankly I am concerned. I emailed her teacher and she requested that we meet to discuss her further. We meet tomorrow afternoon. I will update with what we decide. I think she just needs to do things that are a little different than for the average child. She is far from average and may need to be taught a little different.
Gotta love kids and worrying about them. At least I have very little worries with Oli at the time being. He is going for his 2 year photo shoot with my amazing talented friend Liz and I just can't wait. I also can't bring myself to cutting his precious blond locks so I just know when he is 18 he will say "mom why didn't you cut my hair" and I will say "because I wasn't worried about it"
Oh he is my little love. They all are so special, he is just my baby and has yet to worry me, much, so don't judge.
Keep us in your prayers, Lily with her seizures and our meeting with Andi's teacher. I just love Andi Jane's spirit and style and I want to make school a pleasure and not so difficult, I mean at least not in freaking kindergarten!

Winner Winner Chicken Dinner!

2011-01-24T14:34:00.000-08:00

Each month after finding out the Pepsi Refresh Challenge results these kids looked like this:

But guess what!!!!! SOMEONE didn't play fair and was disqualified from the Pepsi Refresh Challenge AND guess who moved up into the top 10 for the month of October? Yup! That is right! Us!

IFCR will now receive $50k to go straight towards CDKL5 research!
Thank you to all of you who voted! We knew we had to be winners and it turns out, we were!!!
So Yay! Roll those happy faces now...

Weekend Update with Me

2011-01-18T12:03:00.000-08:00

No Lily hasn't gotten her glasses yet. I, my friends, probably look like what I can only assume what a chicken with it's head cut off looks like. I can't keep up and I would love to just give you a glimpse of how my weekend was only because everyone I know on a personal level basically just likes to tell me where in the dictionary I can find sympathy. I thought I would reach out further to you all for some "oh poor you".
So Friday was fun. Good wholesome family night at Peter Piper Pizza with dear friends for a birthday party. Go to bed at a decent time. Life is grand.
6:45am on Saturday my alarm was supposed to go off, but no my blackberry decided it was time to need a reset that I needed to confirm and nothing else can happen until I confirm that, so at 7:15am when I wake up I see sun and I know I am not supposed to see sun, I rip off the blankets, grab my phone, yell at it and it's stupid reset and run like a chicken to get all three kids dressed, fed and out the door by 7:40 am for Andi Jane's first basketball game. Where was their father? At his 6am bible study at church otherwise known as "fight club". I get everyone to the church (that is where they play, we're southern like that, we prefer all activities to be held within church with church folk)(I seriously hope people understand my sense of humor) at 7:50am just like I am supposed to. But I will admit, attitude not so cute. Then the game starts and my little girl is the only girl on her team (when I read the rooster I emailed the coach to make sure that he indeed knew Andi was a girl) and not only the only girl but a head taller than the rest. And not too bad if I don't say so myself. She had only had two practices prior and home girl can hustle! My inner tiger came out on that sideline and I quickly got out of my grumpy mood. It was so fun to watch! I'm pretty determined from now on like it or not Andi will play basketball just like her mama and she will go places I never did. I'm kidding. Sort of.
So after basketball, they kicked butt (they don't keep score, but I did ;), the kids and I headed over to watch my beautiful 13 year old niece in her gymnastics meet which kinda choked me up. She is a level 7 and pretty amazing if you ask me. She looked so beautiful and scored 1st over all! Oli was hilarious as he sat in his stroller just staring at all the girls running by in shiny suits. The kids were good considering we were there a couple hours. Where was their dad you ask? Working on a motorcycle he paid $500 for a shell of a 1972 Harley for. His intention is to custom build it and auction it off at the LilyAnna Blu Poker run for CDKL5 in August in South Dakota during Sturgis week. You all coming? Believe me more to come.
So then lunch with the family. Home. Then guess what I do. I shower and go to work at 4pm. Yup all day full time duty with kids then work all night.
And this wasn't just a typical Saturday night, it was play offs at a sports bar and freaking Green Bay was playing and holy crap if there isn't a huge following for Green Bay here in the sunny state of AZ. The place was packed! And we only had 3 servers. It was banana's! Here are a few comments I got that night "that's ok, you'll do better next time", "is there gonna be a shift change soon?", "you were great!", oh did I mention I slipped on a piece of ice? Like fell on the ground? Oh did I mention my period came two days early? And I didn't get cut until midnight?! I was in near tears several times. Did I mention my head cold I got days earlier that was still hanging around? No. Oh.
I came home to a sick husband and a very large 5 year old in my bed. And I was up at 7am to start my day. Get the kids ready for church alone. Where was their father you may ask? Throwing up everything except for his liver. He was sick as a dog but I was NOT missing church because Matt Hammitt from the band Santus Real was going to be speaking and singing and nothing was keeping me from church. I got to church albeit a bit grumpy, but man it was a good service! So good! Then lunch with the family and home to sick daddy whom I thought was going to die. And the scary thing was I had to work again that night 5pm - close. I took care of everything before I left but I felt awful to leave him with all three. But they managed and that night was not nearly as busy and I was the only girl working 7pm-midnight. I came home and crashed like I was sleeping beauty who just ate an apple or was that snow white?
And thank the Lord it was a holiday and no one woke up, or rather I didn't hear anyone until 8am. And then spent the day cleaning and putting together a piece of Ikea furniture that I had been waiting for Andrew to put together for a month now. It was a toy storage thingy for Oli's room and much needed so I finally just went to town on it with all the kids home. Something I now know was a poor choice. "Mom look! If you rub the Styrofoam together it looks like snow!" Oli found that playing on the slick boards was just like surfing and let's not forget how fun it is to open the bag of just enough screws and little wood pegs and make it rain with them. Oh and then turning the half way done shelf into a train. Yes, it was a fun day. Then I took all 3 to chic fila so we could get out of daddy's sick hair (or rather we could refrain from breathing his air) then we got home put Oli down for a nap and the girls and I went for a walk to Walgreens, which strangely seems a whole lot closer to home when I am driving. Then this family of 5 all crashed before 9pm like we ate a poisonous apple, again.
Today is Tuesday and I ran out of gas on the way to drop Oli off at my mom's (who watches him when I work), but God's grace protected me as I literally coasted from down the road and turned (power steering gone on a full size van) into my parents driveway. And of course my dad the eternal boy scout had a gallon of gas for me and my mom let me borrow her car to come to work. And that was how this weekend ended.
So when I say I know 2011 is gonna be a good year, I don't mean rainbows and glitter, it is how I take all the crap that is handed to us. Was I crabby parts of my weekend? Yes! Did I cry parts of my weekend? Yes! (hello my period started) But the awesome thing is I am fine. I can even joke about it and even when I called Andrew to tell him all the things he was doing wrong (which was irrational and not even true (hello my period??) and before he got sick, I'm not that mean) he didn't get on defense, he calmly spoke to me and we discussed it and resolved it. Prior to our life changing year I would have called and yelled and he would have yelled back and the thing would have snowballed and gotten out of hand. All for an unnecessary reason. So yes this year may suck even more than last year, look at all the tragedies already have taken place! But it is how we handle it now that will change and make the year seem better even if the circumstances suck.
I hope I didn't promise a short update. This post was about as long as my weekend was but that is ok, wanna know why? Because this is my blog. :) cheers.

And my humble quiet side wants to say thanks for allowing me to share my vulnerable heart with my last post. I had been working on the piece for a long time. I had wanted to post what happened but I just couldn't do it in a way that would be like airing out my dirty laundry. It doesn't take a rocket scientist to figure out what happened in our marriage, but those details really aren't for anyone, but us. But sharing how we hit rock bottom and it didn't have to break us was something I wanted to share. Marriage isn't happily ever after and there were times it would have been easier on both of us to just walk away, but our children deserve so much more and frankly so do we. So we are moving forward and making changes and living a life God had intended us to do since the beginning, it is just too bad he had to hit us with a 2x4 to finally open our eyes. But our eyes are open now and we are looking forward.

2010 in depth....metaphorically of course

2011-01-13T15:41:00.000-08:00

When we said goodbye to 2009 we said 2010 couldn't possibly be worse than its predecessor, we were hit hard financially considering our income solely survives on construction. Mostly new home construction at that, and we all know the crash we had. We knew times were still tough, but things had to get better, right? They had to.
But nothing else made 2009 so awful; looking back now it was purely superficial that we were so distraught. Oliver was born in 2009, wasn't that enough reason to celebrate a year? The year of the birth of our only son, our last baby, how dare we take that so lightly? How dare we complain about what we no longer have when we know we still had so much more than many? But isn’t that life, always putting things into perspective for us.
2010 started out just like every other year, filled with hope. Filled with thoughts for the future! Wonder what that year will hold with an anticipation that we keep filled with hope. Maybe this will be the year we find seizure control for Lily. An amazing contract that makes us lots of money. A new car! A winning lottery ticket! But then the year went on and it was just like 2009, well in fact financially speaking, a lot worse. Ouch. Its ok we’ll figure it out we say as we stress each month to make the mortgage payment, and all the other bills we managed to rack up in the years.
Then when I wasn’t even looking the big bad wolf comes and blows our home, and he blows it hard. The whole house shakes and everything falls, breaks and is in shambles. I am left sitting in a room that used to be my living room and nothing is where it was. It was a disaster. A complete and utter disaster. So what did I do? I start putting things back where they belonged. I cried and wiped my tears while I quickly put everything back where it was so it looks like there never was any disruption. How can I ever admit our home was so weak that the big bad wolf was able to blow it and ruin everything? So I cleaned, I swept, I got it almost back to where it was and then as if to say he was not through with us he comes back and blows our home again, but this time much harder and I can hear him say “Ha! Fix this!” and everything I put away was once again all over the place but this time this blow by him was worse, more damage, many more repairs were needed. And this time I don’t get up, I give up. I sat in my living room surrounded by another huge disaster, not knowing what to do. So I do nothing. I sit. I cry. I sit. I cry. My head is in my hands and I quit. I can’t get up. I can’t put things back. Things are broken. Things are ruined. Some things I cared dearly for were broken beyond repair. The mess I was once willing to clean up, was finally too big for my hands because my hands were tired. My only thought was there is nothing left for me to do but leave. Let someone else deal with this mess. I am too tired to fix this. I am too tired to care. I tried so hard to clean this up, but now I simply cannot. I am done.
So there I sat amongst all my stuff, misplaced, broken, some of no use. And from the corner of my eye I see a light, a man, long hair, lots of facial hair, a kind smile. He takes a book he sees on the floor and picks it up and places it on a shelf that wasn’t for books. Then he takes another book and places it next to the other. I mumble to him, that is not where the books go, but he smiles and places another on the shelf. Then he hands me a book, but I look away. He keeps putting books on the shelf.
Then my husband walks into the room, sees me, sees the mess and starts to sob. He falls to his knees; he is overwhelmed with grief and is paralyzed with fear. He tries to hold me, but I push him away. He tries to talk to me, but I turn so I cannot hear him. This is his fault; he didn’t build a strong enough home. I hate him. I hate everyone. I hate everything. I even hate that kind man over there putting those books in the wrong place. Hate consumes me.
Then my husband sees the man and the man hands him a book, my husband looks at the book, at the shelf he is placing them on and at first looks confused, then looks at the man, smiles and walks over to that shelf and places the book on it. Then the two work together. I still sit unmoving. The man again offers me a book to put on the shelf but again I look away.
There still are books on the floor but my husband and the man start to move furniture around and not where it belongs. “The couch doesn’t go there” I mutter, but no one hears me. They keep putting things away in different places, but I start to notice they are placing these things in better spots. I wonder why I never thought of putting that chair over there. I watch the two men smile and laugh while putting this home back together. I sit in awe. My feelings of hate start to fade and maybe I don’t want to leave after all, I’ve never seen my husband work so hard on anything before. He and that man are determined to put this home back together. My heart starts to soften some but I don’t really want to help them yet. I just sit and watch.
Then the man hands me a book. I look up at him and look down, feeling guilty, but not ready to help. The two men continue to work. They continue to put the home back together.
The man again comes to me and hands me a book, this time I take the book, and I walk the book over to that shelf, the wrong shelf, the shelf that was not intended for my books and place the book on that shelf. Then the man hugs me and lets out a loud glorious laugh and I can’t help but join him. Then the man points to my husband, and we walk towards each other, hug each other and we cry. Then together all three of us work together to put things away. Some things were broken and never got to go back at all, something things we managed to glue together and others stayed unchanged just in a different place.
Hardly anything went back where it belonged but it all went together so much nicer than before. Every once in awhile I get annoyed when I forget where that cup goes and I curse the big bad wolf for changing everything so completely. I curse his evil heart; I curse how he ruined our home and then just disappeared, no concern, no sympathy. No intention to help, but to move on and ruin other homes. But at that moment when I feel that hurt swell, I look over at that kind man with the long hair and warm smile and he smiles at me and gives me his hand and lets me squeeze it. We talk about the anger and we talk about that big bad wolf and pray that one day his heart will soften and while I do this that swelling of anger releases.
But the best part of all is when it is dusk and still, I look around at everything and think this is how it should have always been. I am happy for the changes. The way things were was never forgotten and sometimes I miss my old book shelf, even though the new one fits so much better. It took awhile to get used to but I’m grateful now to have things where they belong, where they always should have been. If the big bad wolf never blew our house and left it in utter dismay, we would have never welcomed HIM back in to help us put things in the proper place. We would have continued walking around banging our shins and stubbing our toes, never looking to HIM asking where should this go?
Now our home has a shield around it, it is built not with only bricks and cement but also a form of unity that the big bad wolf cannot penetrate. It is watched over by HIM and we are no longer defenseless.
2010 shook us to our core. But had it never broken us, we would have never learned how to repair us.
So bring it on 2011! Our priorities are set. Our shields are on. There will never be another 2010 as long as we live, in reality or theory. And while the big bad wolf may come again to rear its ugly head, we are prepared and we say bring it on!

Happy Birthday Emmie

2011-01-10T07:23:00.000-08:00

Emmie you are certainly missed. We were watching family videos last night and we saw several taken at FBC (Lily's pre k) and Emmie was on a lot of them. Smiling, "sledding" on snow day, dressed as pretty as possible. I can't imagine the heart ache her parents face each day not able to care for her like they spent 8 1/2 years doing. Today is Emmie's 9th birthday. I wish we were going to go and celebrate with them. I wish she were still here. We miss you Emmie. You were something really special and we feel honored to be able to love you.
Happy Birthday sweet girl, may you be running and dancing and filling heaven with your light.

http://checkoutmyangelbabies.blogspot.com/2011/01/happy-birthday-beautiful.html

Eye See...

2011-01-06T13:35:00.000-08:00

Lily has to see the eye Dr. every 3 months while on Sabril. It can cause tunnel vision (gotta love the side effects each and every AED brings) and the Dr. has to check for nerve damage every single visit to make sure she can stay on Sabril. At the last visit I mentioned I thought Andi Jane had a very slight strabismus and he said bring her in the next time Lily comes in so that was today. And let me just pat myself on the back for having all three kids fed, dressed and at the Dr. (who is a good 45-50 min from home) by 9:05am for a 9:15am appointment, that alone is worth the mother of the year award. Anyway, this eye Dr. is fabulous. It took me three guys to find him. He has bedside manor of a saint. He explains every number or medical term he tells his assistant to write down and he is bilingual, doesn't matter to us, but that is pretty cool and he is rather good looking so it makes the time there even more fun. So the first lady tests Andi Jane's vision and I am surprised she can't read the letters on a line I think she should have. They say she is 20/30 and no concern yet, but they will follow up. Also said after dilation she has an astigmatism just like me and Lily. Still not so bad that she needs glasses yet, but they also diagnosed her with strabismus (imbalance of eye muscles) it is very slight as I am the only person who notices it and I have also diagnosed Andrew with it which just embarrasses him, but I know my stuff, Lily had surgery for this when she was 4. I know my eyes. So anyway no patching just yet for AJ, but he recommended some eye strengthening exercises, but if she shows no improvement by April we will have to patch her. I just figure fix this all now or else no Vogue later. :)
Now Lily's turn. We have been told for years she has astigmatism, but her CVI has always been so bad he always said glasses would be more of a pain than a help, but today he said her tracking was so much better and her astigmatism is getting worse that what she is able to see is pretty blurry so he finally recommended glasses. We have been told for YEARS that her CVI has to get better before he will rx glasses and the day has come! Yippee! Now imaging Lily keeping glasses on is humorous to us, but we will give it a $200 shot. Sigh. I was actually surprised that her rx was -2.25 in both eyes! I was 25 when I had lasik and my rx at that time was -3.75, that is not that far behind. Poor little girl, even with crazy CVI she should be seeing so much better. We will take her to get fitted maybe this weekend. Cute Lily bug.
We follow up in April on that as well.
Just wanted to share, that was this blog was started for almost 8 years ago, Dr. appointments, then I started getting carried away with posts about my hair and then Andi Jane came along and well the rest is history :)

And the winner is.....

2011-01-02T13:00:00.000-08:00

this thing took all day to upload, by the time it finally uploaded we found out we did not win the Pepsi Refresh Challenge again :( but we do appreciate all of you taking the time to vote every day... at least we can rest assure that yet again 3 animal charities will now get $50k. (again, I love animals just not nearly as much as I hate CDKL5)

drum roll please...

Heather, contact me please, I can't get your info from blogger (knothdurft at gmail dot com) :)

2010

2011-01-01T07:55:00.000-08:00

2010 you brought me some of my darkest hours. brought deep pain. you brought so much change. change that never would have came without that darkness. so while i will never say i ever liked you, i simply survived you. but i am better because of you. 2011, let's not be so deep. keep it light for my sanity sake. rainbows and butterflies please.
pepsi results 1/3, thanks to all of you for your diligence!
i will post contest results tonight, i work this am and andi jane is still sleeping

Guilty

2010-12-30T13:45:00.000-08:00

Yesterday I was talking to Andi about guilt. I threw the word out there and she questioned what it was. I explained it as a feeling you get in your tummy when you know you are doing something either wrong or not nice. She said she understood and that was the end of the conversation.
Cut to Target a little later, I tell Andi to pick out a box of cereal, she grabs a big box of Lucky Charms, I say no let’s get this box (generic) she whines and says she wants the one with the leprechaun. I compromise and say then get the smaller box with him on it. Yes I’m cheap. So we finish up our Target trip and get home. I start unloading groceries and I see the generic Lucky Charms. I am totally confused. Andrew makes fun of the box and I say that isn’t what we got. I call Andi into the kitchen and ask her if she got that box of cereal and this is what she says “well I felt my tummy hurt like I had to poop but I didn’t have to poop it was, what is that called? Guilt? Yeah guilt. You said not to buy the big box and I wanted it, but then my tummy hurt so I put it back and picked up the other one.” Then she just walks into the other room. I stand there in awe. She listens. She listens.
Keep voting! 2 days left!

Holiday Miracle Fashion Show

2010-12-29T17:51:00.000-08:00

I am so proud to have been a part of this wonderful charity event for Phoenix Children's Hospital and so thankful they interviewed me and let me "plug" CDKL5.
Watch and see how cute the kids are all in the fashion show!
A couple days left, keep voting!!! Lily had 2 large tonic clonic seizures today amongst all the small seizures she has. We had to add yet another med to her huge daily regime of medications. Please vote, let's cure this stupid disorder! Don't forget to comment that you voted!

Ivanhoe Couture Holiday Miracle from Missionary Films on Vimeo.

Ok Now I'm Begging

2010-12-27T07:15:00.001-08:00

I truly believe December is the most wonderful time of the year. I love everything about it. I love the hustle and bustle, I must because why else would I still be shopping Christmas Eve Eve? I love the crabby people who you run across and the happy happy joy joy ones too.

I love the smells, the baking, the decorations, driving around looking at lights, the mall Santa Claus, trying to get the gifts for your kids that will bring the biggest smiles, making evidence of a visit from Santa. I love it all. I love that my birthday is in the crescendo of it all. I get to celebrate my birthday at the most wonderful time of the year. I love December.

But December 2002 my opinion changed for awhile. I found out I was pregnant December 2001, but by 2002 I had a 4 month old I was afraid for Santa to hold because what if she would have a seizure with him. We had a 4 month old that had a total of 4 very large grand mal seizures on Christmas day 2002. And not much changed by 2003. And 2004. And 2005. And 2006. And 2007. And 2008. And 2009. And 2010.

My attitude has gotten better over the years, but you better bet I still don’t wish every Christmas morning Lily was tearing into presents, smiling big over her gifts. Not propped up watching her brother and sister open gifts and then have a big seizure amongst it all.

Every single time I watch her have a seizure I am taken back to that first one. I am frustrated, angry and mostly sad. I want so much for Lily to enjoy everything she is surrounded with, and maybe she does, but I want her to have fun. Smile, laugh, care about the gift we are showing up right in front of her face.

When I think about all we’ve gone through with Lily, I am reminded of how far I have come with my acceptance with her, but I am never very far off of the reminder of all that I am angry about missing with her.

Yes I stay positive and I love that little girl with every bit of me. But I so selfishly want to see her how I feel she was always meant to be. I want to see her and her sister Christmas morning running to the tree. I want to see that. I want that more than anything else in this world but it won’t happen. But it could happen for another family down the road who has a child with CDKL5 but never have to suffer the way Lily did because we raised enough money and awareness to find a cure and if not a cure AT LEAST appropriate treatment.

We are just a few days away from closing up this Pepsi voting thing and we are currently in 12^th place. I see there are 3 (3!) animal causes in the top 10 that we should be replaced with. I love animals too, but can we even compare a child with an abandoned cat? How can priorities be so confused?

I am just pleading today, tomorrow and the last few days of 2010 that we all vote each day and tell our friends and family to do the same. Let’s push us up several places and get this thing done. Our kids need this more than any cat does. Hell I’ll take in several of those homeless animals, if we all did, they certainly wouldn’t need $50k would they? Let’s put the money to a cause that will save lives and families well being.

Please. And don’t forget to go to the contest post and comment if you voted.

Text 102973 and click the widget on the right of the screen.

Peace and love to you all!

CONTEST!

2010-12-19T12:42:00.001-08:00

Ok I have never done a contest before, but in efforts to win Pepsi Refresh this month I am going to do one. My lovely friend Amy over at http://www.babiesnbags.com/ has offered two $25 gift certificates to her awesome online store in efforts to raise money for CDKL5 Research. Babies 'n Bags is a local owned business ran by a talented mother/daughter duo! Take a few minutes and browse the site, I bet it won't take you long to find something you want.I've got my eye on a cute apron as we speak.
So here are the rules and we are going on honesty here, make the right choices (that is said in stern motherly voice to make anyone who is cheating feel guilty), all I ask is that you vote every day and when you do come back here and put your name in the comment box. If you vote daily, you can comment daily. Two winners will be randomly selected by Andi Jane!
First way to vote is text 102973 to 73774
Second way is to vote at Pepsi and don't sign up through facebook, make an account and vote there (the widgit is on the top right, just click on it)
Thirdly is vote via facebook http://www.facebook.com/apps/application.php?id=263136462520 (it is much easier to be my friend on facebook and click on the links I post daily)
And that is it! Vote and post in comment box. Just your name will do, but if you want to sing my praises you can do that too (although it may make my head large, it won't help you win). If you are mean however, I bet Andi won't pick you ;)
Winner will be named January 1st! (make sure to leave your email in the comment or a way I can reach ya!)

Just because....

2010-12-13T13:44:00.000-08:00

If a song is ever to bring a smile to my face it is this one

what doesn't bring a smile to my face are all the dumb spam comments. so uncool.

Prayers Please

2010-12-08T07:41:00.000-08:00

I found out I was pregnant December 2001 and shortly after those two lines were pink I found myself all over the internet. I didn't know the first thing about why my boobs hurt, why I was crying at a drop of a hat and the next minute attempting a drop kick to Andrew and I found an August 2002 expecting club on Ivillage and joined there I got my questions answers and sometimes just an offer for a virtual frypan to hit Andrew with if needed. Cut to 9 years later, I still go on that board daily (we've moved our meeting place, but you get my point). Yes people will say I don't really "know" these people, but I beg to differ. I've shared with these ladies more sometimes than I am willing to share out loud. We have seen so much together and the fact that so many of us are still coming to that board daily for 9 years says something. I've met a few lovely ladies in the real world and love being a part of this group. And right now we have a tragedy going on and I am asking for prayers for a very special little guy named Collin. He has an awful disease called NMO that he has been bravely fighting for years now and right now he is very sick. http://www.caringbridge.org/visit/collinsquest

His amazing parents have moved mountains to make this little boy comfortable and receiving the best care possible and right now they are praying that God's will be done. I think we all are praying for a miracle and we know God is able, but we pray his will be done.

Please join me in storming the heavens with prayers for this amazing family.

Fun Day!!

2010-12-06T07:46:00.000-08:00

Ok back to splash for a cure a wonderful woman named Christina who is creator and owner of a fabulous children's clothing line called Ivanhoe Couture donated a sweet tutu outfit to our raffle. Well she alone set up a fundraiser for Phoenix Children's Hospital at a luxury resort in Paradise Valley that included a child fashion show and she had our 3 monkeys in it.
I thought I would loose my mind back stage. For some reason I had the only children running like wild animals. Apparently I have no control. Most kids nervous around strangers and in a strange place... not mine.
The outfits were adorable! Her thing is blinged tops and tutu's and cute hair accessories. Well Lily and Andi looked simply sweet enough to eat. And she had a Johnny Cash shirt for Ollie and it says "Baby in Black". It was adorable! Ollie of all the kids was the most comfortable on the runway. Seriously, they clapped and he just ate it up. The child isn't even two. I figured I'd have one model in the family, I just didn't think it would be a boy.
My friend Stephanie emceed the thing, she is a local celebrity here and the host for a local morning show called Sonoran Living, so the kids already knew her and it was funny because Andi Jane came out shy and Stephanie said "she is not shy, show them your stuff" and then Andi strutted down the runway and at the end blew kisses! So maybe we'll have two models. I was more hoping for doctors....
I got to push Lily in her chair and I was not prepared to be handed the microphone and describe Lily's disorder. Ack! I sucked, but Lily looked so pretty it didn't matter.
They also had some very special models, patients of PCH who were well enough to come. We met a little girl named Alexa who has Spinal Muscular Atrophy she is 3 and just such a doll! Seeing her with all her equipment made me sad to see how much some parents have to deal with and made us feel blessed that Lily, yes has an awful disorder, she is a healthy girl. And just so precious. She does not love fashion. She refused to open her eyes when we had the cute hat on her. Take the hat off, eyes open. She is so funny! They did an interview with me and she had her eyes closed the whole time. Anyway, it was an awesome day!
Here are some photos of the busy day. (which I ended with a 7 hour shift at the restaurant, needless to say I'm spending today relaxing! Well as much as I can with wild man Ollie)

bunch more being added to flickr

Early Christmas for Us

2010-12-04T15:19:00.000-08:00

So after almost a year of denials and appeals and with the help of Lily's most awesome PT she finally got her TAOS Orthotic System! Now this thing is incredibly different for Lily. She is not used to be all strapped in. Not used to heavy shoes. Not used to standing so freely. This was her first attempt and I think she did pretty awesome. Since it is a video taken from my phone I am not able to edit so no need to watch all 5 minutes, but Lily is incredibly cute so maybe you will. But we just wanted to share how she is in this at the beginning and I hope to update with her progress!

Happy December folks. After coasting through Halloween and Thanksgiving, I am ready to throw myself into Christmas and making the end of this year make up for all the crap it gave us earlier.

We're sending 2010 off with a bang!

PS we are still in the running for $50k from Pepsi! Keep voting! Let's make December our month! Text daily 102973 to 73774 as well as vote on Pepsi Refresh and Facebook!

Thankfulness 10 - Wrap Up

2010-11-28T14:48:00.000-08:00

I'm gonna finish up this thankful November ala Erica over at the Robertson Family (mom of sweet Avery with Rett Syndrome) and do this list style, because yes I am thankful for the important things like my kids, my home, my family, my life, but there are so many non important yet essentials to my life and I will list them all now. You may need to take an intermission. This may take awhile. These are of course in no particular order...

lip gloss
good tippers
goody spin pin
tampons
disposable diapers
socks
miralax (for Lily of course)
reisling (for me of course)
coffee
even better starbucks
toilet paper
a kid who says "mom I am the girl who saved Christmas"
kitchen aid mixer
automatic pet feeders
a husband who wants to put lights up for Christmas
a birthday in December
a boy he hugs and kisses other kids who are crying (boundary issues or not)
keebler town house flips
a girl who doesn't say a word, but cracks up when you make the sounds she does
scented candles
a good friend with 600 thread count sheets
october, november, december, january, feburary, march and april in arizona
may, june, july, august and september in northern arizona
tivo
bravo
amazing friends
vs pink! sweats
online shopping
36" inseam jeans
a good bra
an amazing church
MOPS
great family
good always comes from bad if you look for it
blackberry
hobo wallets
good old fashion magazines
laptop
itouch
several good purses
a warm home
online banking
chocolate
recliners
my blanket
hubby's sweatshirts
ikea
target
good doctors
movie theaters
good hair colorist and stylist
bret and barb at orthotic specialists
awesome therapists who go above and beyond
a mom who buys great ever lasting gifts like special ornaments every year and personalized stockings
qt with crushed iced cherry and vanilla flavoring in dr pepper

Thankfulness 9

2010-11-23T10:16:00.000-08:00

I'm thankful for a sense of humor and even more thankful for other people with them.
As a server now I run across a lot of people and not every one has a sense of humor. Go figure. But when I get a customer who has one or better yet gets mine, I am golden! It can make my whole shift. So I can only assume the same goes towards other fellow humorous creatures that work in our community. Take the pharmacist at Target yesterday. I had a whole 8 minutes before my shift and Target happens in be where I park my car at work (take note stalkers). I have had this sinus crap, I think we're going on week 4, probably should get into the Dr. but I really only have time to take my kids to the Dr. I don't come very high on my list. Back to my story. I am in a hurry. Advil Cold and Sinus, sure I'll give them a plug it's the only medication that takes away my nasty sinus headaches, is of course behind the counter at pharmacy's because as we all know the crack heads ruin everything. So I hand him the card and he asks me for my drivers license. I hand it to him. Still in a hurry and have that sense of urgency to move along, "registration?" I look up blankly. "Birth certificate?... passport?" I stop staring and smile. "If this cold doesn't go away I'm gonna end up in jail" I joke and he says "it's only a 24-48 hour stay and I hear those ladies are real nice". He's joking with me! He's joking with me! Thank God almighty he is joking with me and not only is he joking, he is pretty darn funny especially for a pharmacist. Take no offense pharmacists, you are smart, you don't have to be funny too. "I'm sure they are just lovely" I say back smiling ear to ear. "Hope you feel better soon" he says. I thank him and run to work. And I tell you what I was in a great mood. Not that I would have been in a bad mood if he just checked me out like most pharmacists would have, and no I didn't want his phone number, it just made my day to joke around with a stranger. Made me realize when I asked my customer if next time he just wants a bowl of ranch because he's salad had too "many greens" maybe I made his day a little better too (btw he laughed and laughed when I said that, I am careful with who I make fun of, the guys who complained about their forks having hard water stains on them, they just get their food).
So share a joke with a stranger. You just might make their day. Or if you're not very funny, just smile.

Thankfulness 8

2010-11-20T14:50:00.000-08:00

I’m thankful for marriage. And not just mine, but the institute of it. And while I try to practice traditional family values, I also love and appreciate all types of marriages. Traditional and nontraditional. I just love the fact that two people come and decide that they will take life’s journey together. And at first you are starry eyed most often young and so in love you can’t see straight. Then life happens and you grow together or apart. And it is sad to see how many do it apart. I am totally guilty here. I was a starry eyed 20 year old and a 21 year old divorcee. No intentions of trying to work it out. We just went our separate ways. I am glad that happened because we weren’t the right people for each other and if we tried to force it I don’t know for sure our future, but I don’t think it would have been so great. And if I stayed I couldn’t have met Andrew and then you see there would be no LilyAnna Blu, Andi Jane and Oliver Isaac Steven Nothdurft.
A decade plus later marriage is so much more than a relationship. And bring children into the mix and here you are in a partnership. You sleep together, parent together, you do your finances together, share a bathroom, closet, and sometimes a vehicle. You live your lives together. There is no you or I, it is us. And so often along that way you forget all about what made you those starry eyed lovers and that’s when so many couples say, I’m not in love with you anymore and leave.
What I love are the couples who stick it through and not only stick it through but see the worst marriage can offer and dust it off and keep on going. And not only keep on going, but do it better. Nothing I love more than a random conversation with an elderly couple who tells me about their marriage together. So often there is humor in their answer of how they worked and so often you still see that sparkle for each other. My parents stuck it though. Andrew’s parents have stuck it through as well as both sets of my grandparents, both my grandma’s passed away with their husbands by their side. Both Andrew’s grandfathers left their wives young widows. Divorce is not prevalent on either side of our families, but sunshine and rainbows aren’t either. I appreciate changes made, love renewed, spirits restored. I believe in forgiveness and understanding. I believe sins are forgiven, but consequences still have to be paid. I believe in a just God who loves marriage and family. In our family I want the man to be the head, to lead our family and support us in all ways. I understand that may annoy feminists, but it is just how I feel.
I heard this song on KLOVE the other day and I just cried. Exactly the words this man is singing were words I was crying this past summer. I wanted to be lead by strong hands. I wanted to have him stand when I couldn’t and you know what, God heard my cries and gave me that man. It wasn’t overnight and it didn’t come out of a good situation, but God knows what he is doing. And sometimes we have to deal with sour to taste the sweet. And it is hard to be thankful for things that have happened, but how can I not be thankful to have the husband I have leading his family the way it always should have been.
This picture means a new start. A new beginning from a couple that has seen it all and then some. We want to grow, learn and start a new and I am thankful to God for overseeing us and making marriage a union I whole heartedly want to be a part of.

Calm Amongst the Chaos?

Life Lessons

Seizures, diets, new bed .. Oh my!

Resolutions?

Another year older, another year wiser???

Christmas came and Christmas gone

Christmas in the air

Updates...

Thankfulness

Let's Shop!

Viva Las Vegas

Family Fall Photos

Reflections

Tiiiimmmeeee is not on my side....

WWPD?

Still recovering

Recovering

What did the one tonsil say to the other tonsil?

Updating

Convert your blessings

You probably think that you're cooler than me

Silly Boy

Quick Update

So Much to Say!

She is turning 9

We're Back

On the Road Again

GAHH!

Weekend fun!

1st and 4th Grade!

Resurfacing

I think I'm lost, I am looking for easy street.....

Life Ain't Always Beautiful

Things I have learned getting older while raising small children

The 4th!

Leaky butts and other fun things

"He's the third"

Riding solo

Heart of fire

April showers bring May .. good byes?

Where have I been?

Surgery Update

Paging Bestie

Surgery Update

Tomorrow is surgery

Ugh

**UPDATE**

Ramblings of a stressed out mom

FINALLY

My favorite?

Perspective

Andi Jane Star Student!

Ortho Clinic

What now?

Andi Jane turns 6!

Can you hear me now?

Need to getaway?

The pleasures of being a woman

Rainy Day

Andi Jane Turns 6!

Update of No Sort

Not looking good...

Giving it up

Daddy/Daughter Dance

Update

Cancellation List Woot Woot

Twitter This

All about the teeth

Neuro Surgeon

Advice

Daddy's Christmas Gift

Kindergarten Fun!

Glad we didn't have 4

Oli's 2 year Pictures!

Oliver Isaac Steven turns 2!

Weekend Update with Me

Just wanted to add...

Once Upon a Time

Seizures can go suck it

Winner Winner Chicken Dinner!

UPDATE