Sorry it has taken me so long to update. The past two months have been absolutely CRAZY..... So let me give you a quick update.
Let's see, We had a Walk-N-Roll for SMA in Baton Rouge. It was really fun, but next year I hope we can get more people to participate (it was really hot) :)
We also on April 28th were hit by a drunk driver that totaled my vehicle. That's been the hardest thing. All of us were banged up pretty bad but Lance was the worst. He fractured his femur and has since been out of work. We are still fighting with the insurance companies about paying off the car, medical bills, etc.
Sydney has been doing AWESOME. She has continued therapy, and visits with her family. She is still walking holding onto to furniture and with her walker. And of course she is still on her "Super Power" medicine as we call it (the clinical trial meds)
We are still however trying to find a home sitter for her, that is so hard. But I have cut my hours way back to 1/2 a day and with Lance home right now, he's helping out to. But she's really getting spoiled by her daddy, staying home with him all day and the girls :):)
Anyway, other than that things are ok. She was however exposed to Hand-Foot-Mouth Disease (a viral infection) so we are keeping a close eye on her. The doctor feels she might have it in her mouth but so far shows no other spots, we'll see how she is tomorrow though. (it take 3-7 days to break out)
Anyway thanks for the continued love and support. I will be adding pictures this week
Oh her eye looks awesome and we go back in 3 mths for a check up, as for her pulmo apt. she had another swallowing study done and we go back for results and discussing a g-tube again. But in the mean time we are trying cups with straws to help with aspiration issues.
Oh - Court is just a few months away!!!
Butterfly Kisses ~):(~
Syd and Holly
