Elephant Nose

I knew this was coming I was prepared for it. I had myself all covinced that a Bipap machine isn't a big deal, and it's not. But it is a big deal. After I got off the phone with the doctor I couldn't sleep the whole night just thinking about it. Does she have apnea because of the SMA or laryngomalacia or just because. Last night I spent an hour and a half awake just watching Andy wearing her little mask and it was just practice we don't even have the actual machine yet! It's just weird to have another concrete remider that Andy has SMA. She has her walker and two kinds of braces for her legs but this one seems more, I don't really know, medical? Maybe I am having a harder time getting used to this because of that. But on a more positive note she did great! I woke up at 3am and put it on her while she was sleeping and she left it there until I took it off at 4:30! Then when she woke up this morning she saw it. Her Elephant Nose and she asked for help to put it on! She wanted to show her brother. It's gonna be aright. I know it I just have to remind myself of that sometimes.

Finally...

I am starting my very own blog! I still have no idea where I am going with this so I am sure it will be all over the place for a while. Right now it will mostly focus on SMA and how it affects our family's life. But there is so much to me so there will be so much more to this blog. I don't want SMA to be the only thing we focus on in our lives so even though it is definitely the biggest thing in my life right now I am working towards remembering there is more to life than doctors, physical therapy, bi-pap machines and experimental medications. There are trips to the splash park, favorite books to read, peach cobbler to eat, and great snuggles at night with my sleeping babies!