The last couple of days were spent in Portland at Shriner’s. Stryder went to the Motion Lab Wednesday because Stryder has a pretty bad sway back and we wanted to see if we need to intervene with a brace or not. (They want to see if adding a brace will do more harm than good.) you can’t see the sway in a normal shirt normally, but it looks like he will bend in half when he is just standing there.
They put a bunch of little sticky nobs all over Stryder and told him he will be making a video game. Stryder asked if it will be in stores 🙂
They had him walk back and forth and recorded it on a video that he got to see. The end result will produce a graph with lines for “normal” 6 year olds and him. We went in for his back, but they said that they are very concerned about his gait and in step. Both of Stryder’s feet turn in, but his left foot is pretty bad. They said that there are two options: One is surgery and one is to wait and see what happens and use this lab for a base line. Because Stryder has other medical conditions, surgery is not the first choice, but in normal cases it would be.
My mom asked her what kind of surgery and they said that they would break the bone below the knee and insert a metal plate. They are sending his lab to a panel of Dr’s for their recommendations and we will find out in a couple weeks what they say. I had assumed his awkward walk was because of his connective tissue, not because of a bone issue and surgery never crossed my mind, EVER.
When you took a picture with the flash on, the little nobby things glowed! It was a great image!
They did the testing with and without bracing and noticed that with his braces on, his walk and stride was so much better. They were pretty concerned about his walking without them, though.
They had pressure plates under the floor that would mark his steps too- You can see in the video where he would step on one there would be an arrow. His stride was so abnormal it took MANY times going back and forth to get one.
There were a lot of pictures take of his feet too and at the end, they got a great picture with Stryder and SD Keebler together. (Keebler did so wonderful the whole time, just laying next to our table.) They put a picture in a card and printed it our for Stryder:
We went to another room and took some more images of his feet and the photographer did some with Keebler again. We filled out a form and will get them in the mail. My pictures with my phone were not as good LOL.
After the Motion lab, we saw Stryder’s regular Dr at Shriners, Dr Roy. He had a lot of other Dr’s and students come in and take a look at stryder’s hypermobility. There were a lot of questions and a lot of curiosity. We will go back for another visit in 4 months to keep a watch on his structure as he grows.
Our visit also included meeting with Dr. Lynn Sakai. She is a researcher who will test Stryder’s blood and filibrin to see how close to a dissection he is. Stryder will have an echo in Bend with Dr Tajchman in a couple weeks and then we will go to Shriners March 10 to draw blood and get his new Camo AFO’s. Lynn was so wonderful and a great friend to both Clair Francomano (for more than 40 years) and Hal Deitz (more than 20) and said that she can help us with Dr’s here, locally (at least Portland) where we won’t have to travel to Baltimore anymore. She was very helpful and would email specifics. How wonderful that would be to have specialists here that will give the same kind of care as we get over there and also that it can help so many others. I told her there are a lot of others with connective tissue disorders (EDS, etc) that can’t find help on the West coast, but she assured me she will help. Dr Roy was excited we get to see Lynn and that she is here on the west coast too!
The Shriners trip ended with Stryder getting fitted for new braces. We are going to try a different kind to see if they are just as good but not as bulky. We return March 20th to get them fitted…