Thursday, April 3, 2008

Our appt. for Andrew in Philly!

We love this doctor. It seems like we FINALLY found a Dr. who is willing to help our little man! He spent a lot of time with us as did his team. So the scoop. Andrew is 1 in 1000000. He has a very rare case of DMD. He wants to do more testing on his muscle that is left over from his muscle biopsy. We are unsure what they will be looking for but have a call into him to find out. They also would like us to participate in a study at Columbia University. If anybody would like to read more about it, here is the link. ( http://www.columbia.edu/cu/md/index.htm )We will be starting Andrew on steroids in the next few months. The doctor does not know how he will react but we will track his progress here for 3 months and then go back down to Philly for a follow up. He had his transition meeting a few weeks ago and he has received a one on one aid for the upcoming school year. That is rare to get in EEE as there is a high teacher to student ratio but they felt he needed it, as did we. We will update you when we get more information!

No comments: