No Whitty Title This Evening..

I realize it has been a week since I updated. Time flies when your having fun? The beginning of the week was rough. Last Sunday night we were in the Emergency Room with Audry. Her fevers wouldn't budge with Motrin and Tylenol. She was inconsolable and heart rate was out of control. [190s.. resting] Fortunately I work in the ER so our wait was short lived. As soon as we got back to the room and in the fluorescent lighting, I noticed Audry had blisters under her tongue, inside of her cheek, and on the tip of her tongue. No wonder she wouldn't eat!! Her temperature was 102.8 when we left the house and by the time we made it to the ER she was up to 104. She had hit her cap for Tylenol, and Motrin. The Motrin also made her constipated. Poor girl. We were in and out in roughly 3 hours. Sent home with "kid quarters" and a follow up with her pediatrician. It took 4 days to for the blisters to go away, and oral feeds to resume. Couldn't have been more secure in my decision to do the proactive g-tube than in these moments. She wouldn't even take her pain meds orally. The g tube I'm sure will save her life more times than not. Aside from the AA diet, this is one of my best decisions for Audry. [The cough assist, and suction, weren't really optionally, they came with the diagnosis.] To any newly diagnosed parents out there reading my blog, or even been doing it awhile, and are on the fence... Get the tube. You never know what life will throw at you and Audry would've been hospitalized without it. Fasting is bad for our kids, but total dehydration is even more detrimental. When it comes to SMA we chose, well I chose, to be proactive about everything. I'd rather have it and never use it, then need it and not have it. The damn surgery was all of 20 minutes and well worth it.

 Random Video of Boog "Moving her Legs" 

The rest of the week, not going to lie, I can't remember. I do remember the last few days. We went to a BBQ, and hosted Game Night over here. The BBQ was refreshing. While I'm a homebody and thoroughly enjoy the confinement of my 4 walls. It was nice to get out and talk with other adults. My right arm did however get more sun than the left. I'm killing it with tan lines this year. At the end of the summer hopefully it's all managed to even out, or at least fade so the random tank top lines aren't as noticeable. The kids had a blast. Emery was relatively well behaved. The last couple of weeks have been a lot of reiterating
who the boss is. Emery seems to think its her. She had a minor meltdown when Michael took away her plate of cake, but we were able to calm her down enough to eat her dinner. Other than that I was very proud of her. After dinner we sent the boys off for some kindling and started a camp fire. The kids roasted smores. Emery was scared of the fire, and spent that portion of the night in my lap telling me she was hot. After 15-20 minutes she informed me she was tired, and was going to stay the night at Bobby's house. She had a blast with those girls and decided she wasn't ready to come home. Fine by me, cause Audry eats by tubey at night, and without Emery here I managed to sleep in :) When I came back the next morning to pick up Nemo she said "Mommmy!, hi!" I asked if she was ready to come home? Her reply: "No I'm gonna stay here for alotta while" Not her most educated statement but still cute to boot. I ended up bringing one of her daughters back to the house because she wanted to "help Emery clean her room"

 I must say I do love well behaved children. When Emery went down for a nap she was begging me to mop my floors, and do the dishes. I finally got the nook done!! Definitely been talking about making it a kid zone for a year. Emery loves her new lounge. It's totally girly, and I'm thinking with the colors it will grow with her til high school. It's very fun! The best news is now I can send her upstairs to watch TV and I can catch up on my shows. No more Dora! When we had game night it was hit with all the kiddos. Definately came to check on them around 1am [yea we went HAM] and all 5 kids were laid in a row asleep. Definitely should've gotten a picture. It also gives me leverage. Emery has one more thing that she will lose for bad attitude. We have been on her, and the last 2 days she really has done a 180. It's been "yes, thank you, and please" as opposed to "what?, no, and hissyfits" I think she's going to be alright. Lol.

Nursing started last night, and honestly couldn't have picked a better night. Not sure why my DME order isn't here but we are out of feeding bags, and as much as I'd love to get up every hour to bolus a feed while she is asleep, I'd rather not. Going to call Olympic Pharmaceuticals in the morning. Of course it would get screwed up over a holiday weekend. I also think I'm going to like this nurse. Audry has to get used to someone being in the room with her. She hasn't been sleeping well at night. She did however nap majority of the day. Sleepy girl. 

We FINALLY got our Support Audry SMA bracelts. They couldn't have turned out better. Lots of people are confused as to how to donate. Here's how it works:

In state within driving distance $2.00
Out of state $5.00
Vanvoucer, WA $2.00 

[If you catch me in town or pick them up from my moms]

Cache, Lawton, Ft. Sill, Tipton, OK 2$
[If you meet my little sister to get yours]

SMA Moms 1 for 1 swap

Basically if you want it mailed to your front door its $5, If you can meet someone to pick it up its $2. Donations can be made online to http://www.gofundme.com/AudryMaxineAgainstSma. If you find me on Facebook I'll give you my address as well. Whichever is more convenient. Donations are going to help us by a panthera micro wheelchair for Audry. The goal is to get her independently mobile. Insurance won't pay for the chair and it's the only one light enough that she can push, only catch is its made in another country. We are looking at about 4,000 to pay for it. The kicker is we have to act fast. With SMA if you don't use it, you lose it. Got to get those arms moving so we can maintain some strength. Anything leftover after the wheelchair fund is met will go towards adapting our home, and vehicles for Audry later down the road. Thanks in advance for anyone who donates, and to everyone that already has your bracelets will be en route as soon as I get a new debit card and mosey down to the post office. 

"Embrace The Suck"