Reality Check!

So I am sitting here having a pity party for myself and Madi tonight! I know my mom will probably call me and tell me to change the title of this post, but nope, it really does suck! I think I have actually been in more denial than I thought about this stupid disease! It gets you when you don't expect it. Madi has been doing so good that it has been easy to be in denial. Well over the last few days she has developed some respiratory infection. And as all of our fellow SMA families know, that is the worst part. So she started with a cough and now it has just developed into thick secretions that she can't cough out! I came home from cheer tonight and the nurse told me that she choked twice. It scares me to death! She has never choked on her secretions before. So now I am scared that this disease is progressing. I hate that I have to be in constant fear! Her oxygen is good and we did the cough assist. Thank Goodness the nurse and Aunt B somehow got her to swallow or whatever happened. I went up to her room, snatched her out of her crib and didn't want to put her back! I just cried and looked at her and can't imagine ever having a night without her! But reality hit me and I realize she really does have SMA and she isn't the exception to the studpid disease! So I got out the suction machine that we have never had to use and made sure I know how to use it and its ready to go in case we need it. We started her on a steroid that the pulmonologist gave us the last time we were there, "just in case", and it is supposed to thin the secretions, I think. She was as happy as a clam tonight and had no idea why I was hugging her and crying and just didn't want to put her down. Say your prayers that she is almost over this illness. Thanks to my friend Clint who set me at a little ease and he is my go to guy because UNFORTUNATELY his daughter has SMA too. Prayers for their Ella who has walking pneumonia right now. Prayers for little Stella who is such a fighter!