Desats, Dr's appointments, and Yogurt :P

Yesterday was a bad day. Right around the time I normally to my blog I was sidetracked by Audry's awful stats. It was 11 oclock before the ladies of the SMA community came to the rescue. She sat at 93 for almost an hour, and nothing was helping. She was also wide awake which is unusual. We ended up doing postural drainage and after a few minutes her oxygen saturation was back up to 100%. Happy mommy let baby sleep. Sleep she did and no more desats. I woke up at 9am confused as to why my 2 children let me sleep that late. Audry was content playing with her tubie in the crib, and Emery helped herself to 6 tubs of vanilla yogurt. No worries diabetes is not in her future, they were the small ones ;) None the less I couldn't punish her because had I woken up at a decent hour, I could've made her a breakfast of champions. Yea, right, who are we kidding, it would've been more like, applesauce or maybe even yogurt. [Just not 6 containers, portion control. ha!] I will retract my last statement about the bad day. It was more a bad night. Jessica came over again yesterday and while at Audry's doctors appointments, the crazy women went to town on my downstairs. I would marry her if it was legal. It looked amazing. We had a nice dinner and then I gave the kiddos a bath. Finally got a video of Audry in the bathtub w/her cookies covered. Enjoy :)




Today was a better day than last night. Took Nemo to school and came back to the house to get ready for the pulmonology appointment. With all the issues we've been having with her sats it was time to see the specialist. We've gone back and forth on the bi-pap since diagnosis. I want it, he doesn't think she is there yet. After much deliberation I agree with him she doesn't need it, but stand firm on I want it. He's agreed to getting the DME out here with the mask and when she is healthy doing a 2 day inpatient to play with the settings and get her where she needs to be. It will be used for sickness only, he doesn't want us using it to ventilate. Something about her fighting the machine because her lungs are strong as is. When our kids get sick they work twice as hard to ventilate themselves. They just need rest and bi-pap allows them to do so. It is a non-invasive means of support that can be used in people who are in respiratory distress but don't wish to be put on a ventillator. IE- "Audry Podry". I'm glad we are on the same page. I think that Dr. C is a very good doctor, and one of his best quality is the the ability to listen to the parent, and work with them, instead of against them. We also got to see both the developmental pediatrician, and the gastrointestinal doctor. Audry remembered Dr. Grambling, he did the surgery, she was nice so long as he stayed at a distance. She always flirts with him but prefers if he keeps his stethoscope at a distance. She's not a fan. Slightly traumatized, ever since the surgery she wigs out if you come at her with it. This was the first time the Dev. Ped. has seen Audry since her diagnosis and got to see all of her improvements. I was the proudest mom showing off all her videos, and her vocabulary. It's the little things with SMA. Audry beating the odds brings a smile to my face. We are still working on getting nursing paid for by ECHO. I'd settle for a night nurse, or even a nurse to go to school with her and cough and suction her there. While, I'm perfectly capable of doing it myself, clearly, just saying a little free help is always nice. Will find out more on that in the next couple of weeks. We did get her stander approved by insurance and I CANT WAIT TO GET IT! DME called yesterday to approve the order. My response, "hell yeah!" I'm looking forward to seeing her cute butt upright. Gonna teach the school how to use it and what to look for fatigue wise. I figure at recess they can get her upright and push her around. It will be like "running". :) Plus she'll totally go from being the smallest kid in class to the tallest.. ahahahahah.

One of my favorite things about Audry is her ability to make everyone fall in love with her. She touches more people in seconds than I will in a lifetime. I'm sure I've said that before, and I'll say it a hundred more times. If I had a nickle for every time a stranger stopped me to tell me how special she was, well my house would be paid off. I've started handing out slips of papers with the blog info on it. So hello new friends! Welcome to our world. :) She may have Spinal Muscular Atrophy but she makes it look easy. God love her and her charming self. The last two days have been emotional, hell the last 3 months have been emotional. This life is emotional but its our life. Our life that I feel blessed to be a part of. I thank God for giving Audry to me and not to some crackhead who wouldn't take care of her. The sweat, the blood, the tears, are all worth that precious smile from this joyous little girl.

"Embrace The Suck"