The short version...
If Ryan is going to learn to stand or walk, he is going to need something to stand on, so priority #1 is getting those feet and legs straightened out. Ryan starts the first casting on Wednesday and then continues to get a new cast every week for a while. From what I understand, yes, it's a regular little plaster cast just like when Mom and Dad were kids. (I think that it's just feet/ankles to start, so the casts will probably be to his knees -- Derek)
The long version...
Kiersten, Derek, Aunt Jen and Ryan met Dr. Lawrence Rinsky on Wednesday, May 14. He is the pediatric orthopedic surgeon who is in charge of straightening out most of Ryan's crooked parts. Stanford being a teaching hospital and all, a young doctor named Arthur Lee came in first and started with something like this:
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"...so Ryan has some stiffness in his joints....hmm....can you describe, what you mean by that...?"
(Aunt Jen -who is holding Ryan- turns him so that young Dr. Lee can
see his legs neatly folded together)
"Oh...Okay then."
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Dr. Rinsky came in shortly and told us that commonly in cases like Ryan's, not all of the nerve pathways develop, meaning that some of the muscles can't contract. Hence -- his arms are straight because his triceps, which work, pull them straight, but his biceps aren't doing their part to bend them. Dr. Rinsky also stretched and bended Ryan and was generally positive about the range of motion that Ryan did have in both his legs and his arms. Down the road, there may be tests and muscle biopsies to try to ascertain what we can hope to get out of those little arms, but we have not confirmed what the condition of those muscles or nerves are.
The above concepts apply to his legs too, but I don't know the names of all those muscles, and I'm sure you can all follow the concept without me having to look it up!
That's pretty much where things stand for now. Treatment starts right away, and there is not really any way to know exactly how much "normal" motion Ryan is going to have down the road. We'll just stay hopeful and continue to stretch him until he hates us or the physical therapist tells us to stop.
If anyone has more questions (I know -- how could you after such clear, concise, intelligent updates?), you can email them to Ryan's gmail.com account at ryanjmcauley and Derek will check it every so often. (We're avoiding typing the actual email address to avoid automated spammers, but it's ryanjmcauley and then @ and then gmail.com)
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3 comments:
Dear Ryan-
Your doctor sounds like he really knows his stuff - I'm glad, because that is obviously so important. I had quite a smile to hear about the young resident or med student who came in with his open-ended question (just like they taught him in his "Patient-Doctor Relationship" course, no doubt!)
I look forward to more updates, and hopefully to meeting you in June!
With Love,
Your Godmother,
Aunt Sharon
Some stiffness... oh for heaven's sake! I think Dr. Lee has some stiffness in the head! We had an intern at the hospital who was giddy with excitement when our daughter was being seen for the first time. I was very proud of myself for controlling the urge to kill. :)
Triceps! I can't tell you how relieved I am to hear you say that! Ryan is so much closer to future independence! When Ryan gets a little bigger (starts tracking toys with his eyes), lie him on his side and hold a toy out in front. Without gravity holding down that bicep, he can learn the connection between his hand and body by "reaching" using his tricep and shoulder. Triceps open up new worlds: lifting himself up, pushing his bottle away, playing the piano, repositioning himself in a chair, etc. I'm so glad to hear that!
His legs will improve so radically! Casting is the absolute best thing you can do for him. The casts will most likely go up to his diaper because the feet need an anchor and that is provided by having the legs bent (90 degrees) and casted up to the upper thigh so the cast doesn't slip. Having the casting will be like having stretches and therapy constantly so you don't have to do it and can instead spend your time cuddling!
Doctors tend to see babies as piles of body parts. So when they say anything positive, they really really mean it! Range of motion is so important. I'm glad Ryan has more than expected. My daughter had almost no ROM and now can bend things we never thought she could. I'm so glad he has a good head start. And I'm glad he has such good parents who care about him and are doing the best for him!
OK Maybe this will make it!! Thank God Ryan looks like John and I, and not Derek!! And thank God Ryan has Kiersten as his mom. There couldn't have been a better choice.
Derek-- Keep this blog up to date!!!!!
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