This is information I received from Dawna Seavers!
Are you doing any physical therapy or occupational therapy? If not contact your local First Steps people. They are wonderful. They can help until your daughter is 3. They will help get her things that she needs to help with physical therapy etc. One thing I have found out is that because this is so rare as a parent you have to do most of the leg work. There are a couple of clinics that you can take Crystal to. We are still trying to get the numbers. One is in Columbus Ohio (they do a lot of the clinical trials). His name is Dr. Kissel and his number is 614-292-1234. Dr. Bach is the big Neurologist and he is on the East coast somewhere. There is also a lady in Texas that is the big Pulmonary person. You really should take your daughter to see a Pulmonologist if you have not done so. If at all possible I recommend going to the Conference they have each year. It is very informative as well as you get to meet other parents. First Steps can help with the expenses as well as the Families of SMA and there is a Government entity here in Indiana that can help out every other year. I spoke to another couple here in Indiana and they were able to get most of the trip paid for. We did not find out about some resources until we got from the Conference.
