It has been awhile. One of these days I'll get better at finding the energy to log in and update our followers. Alot has happened. We've raised $2,000.00 for Audry's "Legs". The Panthera Micro wheel chair designed for SMA children. Just to cover some facts that are my frequently asked questions.
- No Insurance doesn't cover it. I've already called tricare and double checked, matter fact I tripled checked. Called a few different times to see if I got the same answer. It was no. Even with a doctors letter of necessity. This particular chair isn't covered.
- The money raised goes to the chair. Not a boob job, or a getaway as some people seem to think I'm asking for donations to fund a little something on the side for myself. People who know me, know how hard it is for me to ask for anything. None the less feeling like I am unable to provide for boog. I think it is important for her to be mobile and have that independence and this is the quickest avenue, as well as the most enriching.
- Why does it cost so much? It's made and distributed outside of the United States.
This chair will give Boog the opportunity to do what other kids already get to do. She will no longer have to sit with the teachers at recess but get out there and wheel around. She will get to be upright with her peers, and if she wants a toy across the room by golly she can wheel her self over there and get it. Every day I hear people complain, myself to be included, about how they hate running, or just want to "sit down". We take for granted what boog is unable to do. She helps keep me in check. While getting her walking is unrealistic without a cure, adapting to her needs and getting this specific chair will meet her needs halfway is attainable. I can't wait for Audry to be able to roll away from me mid conversation when she doesn't like what I have to hear. Sounds crazy but until you have a child in her shoes you don't fully appreciate the little things. I'm looking forward to the girls playing tag. With the help of the many that have donated we are close to achieving the independence Boog needs. I can't thank the family and friends who have so generously donated towards our cause. Also the complete strangers. Still awaiting word to see how the fundraiser in New Jersey went, but I'm sure it was a hit! I still have bracelets left and donations are still being accepted. www.gofundme.com/AudryMaxineAgainstSma.
Enough about the chair and fundraising. Hows the little stink doing? [HOT MESS] Well she is sick [again] I know it seems like every other week. They swear our kids aren't auto-immune deficient, but I'm starting to think otherwise. She catches EVERYTHING. Sure, If I pulled her out of school and kept her home theoretically she'd stay healthy. However with myself working in the Emergency Room, and big sister still in school, she would still catch everything anyways. Seeing as how we all can't stay locked up in the house, I'm okay with her being in school. By the time she starts kindergarten she will have a wicked immune system, and maintain perfect attendance! I get a lot of grief for my decision to leave her in school. I want Audry to live a normal life. I want her to go to school, to have friends. However long God chooses to grace us with her presence, I want her to enjoy it. Fortunately Audry hasn't progressed in the disease so much as to being unable to attend school. I find my self sometimes jealous of the type 3 families. Its sick I know. I immediately punch myself in the gut for even considering being jealous of another family with a different form of this awful disease. At the end of the day whether it be a type 1,2,or 3 family. This disease is the same in the sense that it blows. Lately, I've been focusing on the positives. The things Audry can do. Here is 10.
- Melt the heart of a perfect stranger.
- Sit unsupported
- Sleep through the night
- Bounce back from illness virtually unscathed
- Smile.
- Feed herself.
- Giggle.
- Communicate
- Watch Dora all day long and not want to gouge her eyes out.
- Dance. While its not the conventional way to dance, she will rock out with her hands in the air and shaking her hips.
- [I lied] Most importantly Audry doesn't let SMA get her down. No matter what she's doing its with a smile. She truley enjoys her life and the cards she's been dealt. My only hope is that as she grows older, and believe me she will, she holds onto that attitude.
A little more on the hot mess fiasco. This week has been pretty exhausting. As is with every illness that SMA throws at us. Last time I updated we had hand foot and mouth. We will call this illness "pain in the ass" because we don't yet have a diagnosis. I can tell you it snuck up on us. Normally I have a warning that its coming. She coughed once on Sunday. I don't count that as a warning because her sats have been normal until Tuesday morning. Audry had a low grade fever Monday nigh. 99.4. Put her to bed and that was that. The nurse told me she hit 100 during the night. Sometime in the next 3 hours all hell broke loose and Audry was at 103.4. Her alarm woke me up because her heartrate was 220. Yikes. Made her an appointment and had the doctor run a viral panel. While he didn't see the point, I did. I may have spiked an attitude in telling him it wasn't going to cost him personally so run the damn test. Sheesh. We find out tomorrow what has been reaking havoc on Miss Audry. The fevers have been anywhere from 101-105. The generally like to kling to the 102 and 103 mark. The motrin around the clock has done a number on her digestive track. We spent all day yesterday listening to her "owie, mommy, owie" Last night we gave her a suppository and a bolus of miralax. It took damn near 12 hours to get some poo. She was still in pain and after her morning bottle she so kindly projectile vomitted all over myself and the couch. After getting her cleaned up we switched to pedialyte. While the AA formula is what her body needs, its also quite valuable, and isn't going to do her any good all over my couch. This afternoon after a monster poo that also plastered my couch I put her on a continous feed of AA formula. My "Embrace the suck" moment of the day definately giggling as I'm steam cleaning the couch. I've been talking about it for weeks. Audry was just making sure I got it done. :0) Thanks Boog! Shes sleeping now and hasn't done alot of that the last few days. The fever broke last night, only to return this morning ten fold. The worst part about all of this is not the treatments, not the work it takes to take care of her, it's watching her, in pain, and knowing that it's got to "run its course". For a kiddo that smiles continuously I can literally count on my hands only how many times I've seen that gorgeous smile. My heart breaks for her. She cries for me to hold her even though she knows its more comfortable on the couch on her side. Lots of trial and error these past few days. I look forward to next week and hope this crap stays out of her lungs. To add insult to injury boog also has some new teefers coming in. At least when she gets better and flashes her smile it will be even bigger with her new additions.
"Embrace The Suck"
:") love it.
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