Say what???

not much new

Soooo - not too much has changed since my last post, except Ryan's emerging personality. He seems to have a penchant for making comical faces...his latest one we call the "Bill Cosby". The picture I post of this face does not do it justice, but whenever I pull out the camera, he stops.




As far as his progress physically, Ryan continues his therapy weekly. He has moved to a more active area of the therapy room where he can work on steps, balancing, etc.. Since he is more interested in play, we are able to use more objects during the activities. However, Ryan has also discovered that he can truly voice an opinion, making daily stretching almost impossible. It has become a constant battle and I have resorted to tricking him into stretches. Luckily, he likes when I sing to him, so this has helped during those times.

I have begun piano lessons with him....hahah just kidding....but he does love to play, even though he doesn't quite look like it in this picture....he's mostly mad because I got up to get the camera...




It seems as though we are moments away from the boy being able to sit up completely on his own, a milestone I once took for granted a lifetime ago. We are lucky he is so motivated and watching him succeed brings unbelievable joy.

Ryan's latest trick....

The summer has come and gone....Devin has begun kindergarten, Lily will start preschool next week and Ryan has been hard at work. Over the summer, Ryan was fitted with his first pair of AFO's. These special shoes give Ryan the ankle support he needs to work on standing and they have done wonders for him! He has also been fitted with Benix splints and we have also been using Kinesio tape - yes, like the tape used during the summer Olympics.

Ryan

Click here to view these pictures larger

go-go-gadget GOBOT!!!

So, Ryan has been introduced to the Go-bot. I have a video, of the second time he is on it. He has only made it move 3 times by himself, none of which I captured on video, but you'll at least get to see him on the thing....

where is video #2?????

We are experiencing operating difficulties (I'm having a hard time getting video #2 attached) Please stand by....

2 new videos

Sooo - here is the latest that I have captured on video. One is Ryan working on getting up on all fours, which he is getting closer and closer to accomplishing. In that same video, you will also see him "crawl" backwards, which is a milestone developmentally, as that backwards crawling leads to forwards crawling. The second video you'll see Ryan doing his "army crawl" to get to me...or really to get to a book. He swings his hips from side to side and has become pretty efficient at it. Like I wrote, we refer to this as his "army crawl", as Derek and I have decided that we are not going to corolate it to any sort of creature-like movement. The terms "wiggle worm" and "sidewinder" came to our minds, but after hearing that a few times, it started to bother me, so we are learning to be more careful with our choice of words, especially around the other children. PLus, Ryan is soooo much cuter that either of those creatures, I think anyway! Enjoy the video! xo Kiersten

Ryan and the french fry

Ryan surprised us with a great gift last night. Background: Ryan has not been able to get food to his mouth for obvious reasons (go ahead, try to eat without bending your elbows)....once before, about a month ago, I tried to get him to eat a cookie by resting his forearm against the tray of his highchair. He was momentarily successful, which I was psyched about, but 2 points - I helped him along in the beginning and we haven't seen that action since...until last night.....all by himself. This video is bite #2.

Yo - check it out

Ryan was fitted with removeable soft casts to work on his standing....this is what he can do after 2 weeks of working with those casts.

Yay Ryan!

Video

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