Hi Christine; We visitn he MDA clinic at UCSF even though the one at Stanford is closer. We were extremely distraught and disapointed by the way were treated there. UCSF have been fantastic as has Dr. Strober. We have Calum's treiennial IEP coming up in a few days and am at a loss (for the first time) what I should be asking for from the school district and what services Calum should be receiving. We are in the San Jose Union school district. Was wanting to know what others are receiving and if they think it is helping. There has been services I have refused, just don't see where they would help, just would mean he spent more time out of the classroom. Any suggestions would help: Thanks!!
Christine, We probably saw either other and didn't know it. We've been home for about 4 days and I'm still recovering too. Wyatt did amazingly well on the plane for his first time. I'm feeling cautiously positive, which is the best I've felt in a few months. Keep in touch.
I haven't been on here in a while, but thanks for the welcome! We've been around PPMD since around 1995 - our son was diagnosed in 1992 at 2 1/2. Bill will be 20 in June (hard to believe), is in community college, almost has his driver's license (long story) and is doing very well. He walked until he was 16 and had heel cord surgery (his only surgery so far besides tonsillectomy). He has been taking Deflazacort every other day since he was 8 1/2. His heart function is fine and pulmonary is still at 83% - all in all, we can't complain too much!