Wednesday, February 18, 2009
Wednesday, February 11, 2009
February update
Here we are in mid February already and I thought it would be a good time to check in. Since I last wrote, we met up again with Dr. Rinsky to talk about Ryan's hips. The meeting was quick and basically we were told that he was not going to do anything regarding the hips at this point and that we would go back to see him in 3 months time to get a new order for shoes, as Ryan's feet are growing out of his current shoes.
After just a few weeks with our physical therapist, Jessie, we had to once again say goodbye to another therapist, as she has left on maternity leave. Our newest pt is Manisha and she is very nice and has already taught me a few helpful ways of doing Ryan's therapy at home, like incorporating an exercise ball to work Ryan's core muscles. Since he has had limited movement in his extremities, his core muscles are weak, so we are working different movements to get those abs, obliques and intercostals to fire.
In the next week, Ryan will be fitted for a few new splints - thumb spicas, elbow flexion, and....now don't laugh...cock-ups for his wrists. Yes, that is really what they are called - you can google it ;)
Ryan's new occupational therapist, Jennifer (yes, that was the same name as his previous OT at Stanford), has been working on Ryan's evaluation, where he is being "tested" on different actions to see where he is behind and where we need to work. We found out that he is more or less in the "normal" range for hand and finger use, which was great to hear. Ryan has also accomplished another amazing feat - he is now able to push his body up, while on his belly, far up enough to get his belly button off the floor. Yay Ryan! We also ordered a abdominal binder...no, no, not for me or Derek.....the purpose of the binder is to teach Ryan to arch less and keep his ribs from flaring out to gain movement.
I will be bringing Ryan to Seattle mid-April to go to a special nation-wide arthrogryposis clinic. Apparently in Seattle they literally wrote the book on Ryan's condition and they have clinic quarterly, where there are a ton of resources to help us move forward with treatments and learn about different options. I'm looking forward to it and I hope to learn even more so we can help our little guy as best we can.
I must get some new video up - Ryan has changed quite a bit since the last video of him in the tub. I hear over and over again that Ryan has such a great personality and he charms everyone he meets. And I couldn't ask for Devin and Lily to be better siblings. They absolutely adore Ryan and they are great helpers.
OK - I think that's about everything I can say to get you all current. Love to you all.
-K
After just a few weeks with our physical therapist, Jessie, we had to once again say goodbye to another therapist, as she has left on maternity leave. Our newest pt is Manisha and she is very nice and has already taught me a few helpful ways of doing Ryan's therapy at home, like incorporating an exercise ball to work Ryan's core muscles. Since he has had limited movement in his extremities, his core muscles are weak, so we are working different movements to get those abs, obliques and intercostals to fire.
In the next week, Ryan will be fitted for a few new splints - thumb spicas, elbow flexion, and....now don't laugh...cock-ups for his wrists. Yes, that is really what they are called - you can google it ;)
Ryan's new occupational therapist, Jennifer (yes, that was the same name as his previous OT at Stanford), has been working on Ryan's evaluation, where he is being "tested" on different actions to see where he is behind and where we need to work. We found out that he is more or less in the "normal" range for hand and finger use, which was great to hear. Ryan has also accomplished another amazing feat - he is now able to push his body up, while on his belly, far up enough to get his belly button off the floor. Yay Ryan! We also ordered a abdominal binder...no, no, not for me or Derek.....the purpose of the binder is to teach Ryan to arch less and keep his ribs from flaring out to gain movement.
I will be bringing Ryan to Seattle mid-April to go to a special nation-wide arthrogryposis clinic. Apparently in Seattle they literally wrote the book on Ryan's condition and they have clinic quarterly, where there are a ton of resources to help us move forward with treatments and learn about different options. I'm looking forward to it and I hope to learn even more so we can help our little guy as best we can.
I must get some new video up - Ryan has changed quite a bit since the last video of him in the tub. I hear over and over again that Ryan has such a great personality and he charms everyone he meets. And I couldn't ask for Devin and Lily to be better siblings. They absolutely adore Ryan and they are great helpers.
OK - I think that's about everything I can say to get you all current. Love to you all.
-K
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