new facebook page

If you are on facebook we have a new fan page called miracle for madi that you can join. My cousin Jessica set it up. We posted some pictures too. So as for updates, not much new. Madi is continuing to surprise us. She is still taking many steps on her own. She loves her walker now and is finally beginning to ask for it so she can go places. I want her to have independence. I was so sad at Easter when all the kids were running around and playing and she had to stay with the adults. She can't do stairs, the walker isn't so good on grass and if I put her somewhere to play the other kids don't stay too long. I hate it! Don't get me wrong, I am so grateful for the miracles she has shown us already! But the disease is still eating at my heartstrings.
Another thought, why is it that handicapped kids have to go on a totally different bus than all the other kids? Can't they just put that dumb lift on a normal bus? I took Molly to Kindergarten roundup a few weeks ago. They take the kids on a bus ride and all I could think about was next year when they may have to leave Madi behind cuz they can't fit all the kids on the short bus. It just doesn't make sense.
On a positive note, we started with a new nursing agency. For the most part, I love it. Tonight was the first no show. There might have been some confusion in the schedule. Thank goodness Grandma Maureen was here! Our nurses have been great. The only problem is we have had like 8 nurses in one month so that they can fill Madi's shifts and train people. I am hoping by May we will be down to 2 or 3 nurses. It is hard for Madi to form a relationship and trust anyone when there are so many people taking care of her.
The annual SMA conference is coming up in June. They change the location every year and this year it is in California. We have gone the last two years since we found out about Madi. It is such a refreshing weekend for Tom and I. We get to see all these families like us, hear the latest research and just enjoy Madi. As of right now we can not afford to go because of airfare. I am really sad and am hoping something comes through. I am asking if you know of anyone who has airline miles they would like to donate to let me know. We would gladly use them for you! Well if you are on facebook please join our page. I will try to update often. Continue your prayers for Madi! Thanks!