Friday, September 12, 2008
I ended up calling Ryan's neurologist and we got him seen yesterday. We first went to PT and she confirmed that yes there is something wrong with Ryan. He has hypotonia (poor muscle tone) and not only is his legs weak, but his neck and arms are also weak. I felt good knowing I wasn't crazy. Ryan is also very flexible- more than he should be. We then went to his neurologist appt. and he actually spent time with us. He says this is not from his anti- seizure med and that we need to do some more testing to figure this out. So Ryan will be getting PT 2 times a week, braces for his feet, an MRI of his head and spine, an EKG- to make sure his heart muscles are okay, and EEG- to try and get him off his seizure med in case it is doing something, a whole bunch of labs- including genetic testing and to rule out Musclar dystophy, and will be going to Gillette Hopsital to see an Orthopedic dr. - to make sure it isn't anything from that point. At PT the therapist said Ryan is walking with his hips, not his thigh mucsles that is why he looks like he is walking inward. Ryan is doing a good job at compensating, so we don't always see the things with his arms and neck. RJ and I are a mess we are trying to take each day at a time. The thing that really sucks is his tests will not be done until Oct. 17th! That was the soonest they could get him in at the Children's hospital (where I use to work) for his MRI under sedation (which this what I use to do there). My brain is trying not to think the worst- but it is hard. I thank all of you very much for your thoughts and prayers! Ryan is doing great- he thought PT was fun- got to run around while we watched.