Well yesterday we met with the equipment guy to get some things ordered for Madi. We are pretty sure that insurance is going to help pay for the wheelchair. So we ordered one that is just her size. It is in pearl pink. We'll see if it gets approved or not. We are also ordering a cough assist machine that helps Madi cough when she is sick. This will hopefully prevent the pneumonia that is so common in SMA kids. We have to order a stander and a walker. We are very hopeful that she will be able to use the walker someday. The most expensive thing that we would like Madi to have is something called a Standing Dani. It is a stander that is powerized. She gets in the standing position and can move a joystick to travel while getting her standing time in. She needs to stand about 2 hours a day to build bone density. This is not considered a necessity to the insurance company, but wouldn't you say having a 2 year old stay in one spot for 2 hours is torture? The estimated cost for one of these items is $14,000.
I haven't heard from any of the celebs yet. I did invite John McCain and Sarah Palin in addition to the celebs I mentioned the other day too. I can't believe I'm not at the top of their priority list! Haha!
Breaking News again! Madi has mastered crawling up a few stairs all by herself! She did it at home and at the sitter. Now I need to be following her! Believe me I am grateful for that! I bet she will be getting upstairs in no time. Well 8 days and counting until the benefit. Good Luck to all our fellow SMA families who are enduring the Beaver Dash next weekend. Wish we could join you! Have fun! Thanks for all your support. God Bless all of those remembering the horrific events of September 11, 2001. All who were adversely affected are in my prayers.
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