SMA awareness on TV

We are so lucky to have had ABC's Extreme Makeover help a fellow SMA family. It was so neat to watch the show on Sunday night and meet such a beautiful, mature, and intelligent little girl. I am so happy that now so many people in the world saw what SMA is and how it affects everyday life. I have such a positive outlook on the future and I am only hoping that when Madi is 8 or 9 there will be a cure out there. I had many tears while watching it and lots of people called me and shared their feelings about the show.
On another note, Madi is still doing great. She has a bit of a cold right now and we are hoping that it doesn't turn into anything serious. Unfortunately I was sick, still am, all last week and I think she got it from me. She woke up a few days ago really hoarse. She sounded so cute, but it really isn't cuz she can get pretty sick. Last night she woke up crying and I couldn't figure out what was wrong. She still doesn't tell me when something is wrong. I tried out our new pulse oximeter and it said she was at 99% for her oxygen levels so all was good. She wears a hip brace at night and lately she has been telling me, "It hurts" It is so sad but I don't know if she has learned that I feel bad for her and take it off or if it really hurts.
We continue our weekly therapy sessions. Our water therapist just had her baby! Congrats Tara. She has a baby boy named Griffin. One of our best friends, the Dykstras had baby number 4, a girl, named Abigail. And last week our friends the Osborne's had a baby girl named Natalie! Lots of new healthy babies to be thankful for.
We are waiting to hear from the Standing Dani people. They have to come give us a quote and measure Madi. We are also awaiting our wheelchair. I will be going to Madi's preschool in a few weeks to check it out. Thank goodness her preschool teacher was thinking ahead and saved a morning spot. I think Madi will really like school. I hope we have her standing dani by then.
I am still in awe over the generous people that we have in our life. I don't feel like I have thanked enough people for all the donations and time they spent helping us with the benefit.There are so many people to thank individually we would not have been so successful with out you! We are truly indebted to each and everyone who helped out in any way. Whether it was just going because you are a friend of a friend, going to help, just wanted to say hey, came from out of town, whatever the case thank you!! But most importantly please know that from the bottom of our hearts- we are truly and deeply appreciative of each and everyone of you and what you have done for us. Thank you! I also keep a similar blog on www.carepages.com/carepages/MiracleForMadi If you go there and sign up you can get an email that will let you know each time I post an update.