Friday, September 19, 2008

Potty Training

We have started our 3 day potty training- wish us luck!

ETA: potty training didn't go so well- we will try again after things settle down a little- too many appts to go to right now!

Thursday, September 18, 2008

CPK Result

Ryan's result came back normal! His level is 97 and abnormal starts at 200. I am relieved to know that his muscle weakness it not due to muscle wasting and this rules out muslcar dystophy. His Gillette appt was made today- he will be seen Sept 25th. I am happy that we were able to get in so quickly!

Tuesday, September 16, 2008

What a trooper!!

I am so proud of Ryan! Today Ryan had his CPK or CK blood level drawn and didn't even complain. He was so good- just sat there and watched the lady poke him and fill up the tube. He wanted to know what they were going to do with his blood. He is so smart. It will take a few days to get the results back.

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.

Tuesday, September 9, 2008

Walking problems

I took Ryan in to the doctor today because he continues to have more and more problems with walking. He use to walk with his feet inward- which is a very common thing with kids when they first start walking and they usually grow out of it by 3 yrs. But now he is walking (when he does) on his toes or the front of his foot, at times will drag his feet (when he is tired), has now has started to trip more, and his feet are very inward now. He will walk short distances and then wants to be carried because he is tired. RJ and I and others have noticed a big change in the last 2 weeks. He is walking like he did when he very first learned how to walk. When he runs he has to use his arms a lot to keep his balance. He will be seen by physical therapy and I will know more from there, but our Dr. who I trust very much is worried that he is having muscle weakness that could be developing something as serious as muscular dystrophy. I am trying to not drive myself crazy with the what ifs. I haven't even looked anything up. I don't believe he could have MD. If he has to wear braces to fix this I will be more than happy with that if that is all it is. RJ and I have been watching this ever since he was hospitalized a year ago and just have felt something not "right".