wrapping up 2008

So it's been a busy time for everyone and let me be the first to apologize for not keeping Ryan's blog up-to-date. Let's see if I can wrap up his progress since we last wrote in September.

From September through November, Ryan continued to wear his "Dennis Brown bar" and nifty suede booties to keep his feet straight, though by November, Dr. Rinsky has had us use them about 1/2 of the day (generally when Ryan is asleep). His feet look remarkably better than they were and it amazes me when I look back at the pictures posted on this blog from May/June.

We saw an upper extremity specialist in Sacramento, at Shriner's hospital. That doctor gave us a very positive outlook for Ryan's arms, especially his hands. He told us to continue with the stretching of the elbows and to check in again when Ryan is close to a year old. Hopefully we will gain a bit more range of motion by then (he currently has about 90 degrees in his left arm and about 40 in his right).

November we checked in again with Rinsky, this time to see about Ryan's hips. We did an xray, but the Dr was unable to make a diagnosis based on it, so he ordered an MRI. Before the MRI, Ryan, myself and Grandpa went to Albuquerque, where we met Dr. James Drennan. We were recommended to him by a bay area Dr/author on neuromuscular disorders who has been so very helpful to us. Dr Drennan was a pleasure to work with and spent an hour and a half with Ryan. We saw him to get his opinion on what to do about Ryan's hips, if they are out of socket, if we should move forward with surgery (apparently it is pretty controversial to do).

It turned out that it really did not matter too much the recommendation as we recently received the results of Ryan's MRI. Basically, and I am conveying this in as simple terms as I can, Ryan's hip sockets are not formed properly. Instead of a nice "C" shape which the socket should be, Ryan has more of a "J" shape. So, while his bone appears to be in socket, it is, in reality, just resting in the area it is supposed to be, but nothing is keeping it there. We have not been in to see Rinsky to discuss the next step at this point(we actually found out the results of the MRI through Ryan's new PT).

On a brighter note, Ryan continues to become more mobile and is rolling and wiggling to get from point A to point B. We are currently working on him using his passive range in his left arm to rest against the highchair in order to get a biscuit to his mouth. He's almost there and I will soon get a video on to show you all this feat! As mentioned earlier, Ryan has a new physical therapist, Jessie. She is from New York and she means business when it comes to getting Ryan functional. We are glad to have someone who seems to work hard for our son and we look forward to his continued progress. We have said goodbye to our friends at Stanford, Amy the PT and Jennifer, the OT - they both have been a great help to our family and we are much appreciative for their efforts.

Anyway - I have to log off now and I will update more by week's end hopefully.
-K