Vascular Issues

My son is doing great and just turned 14 and started high school! I do often worry that I am missing something--some therapy he should have, some specialist he should see, some test he should have. It took me almost a year to convince the doctors to have him get a scan of the arteries in his legs. His old orthopedic surgeon mentioned to me that my son is missing some of the arteries in his legs, and no one ever further looked into it. I thought it was important to finally find out more about it because he was going to have surgery on his foot. Then he broke his femur, which is a whole other story, and the foot surgery was postponed.

So in the meantime, he has had the scan, but I haven't been able to find a vascular surgeon who will see him. His orthopedic surgeon did give a disc of his scan to HER vascular surgeon, who said she would see him, but I'm having a hard time making an appointment with her! I have called many times, and they never get back to me! It turns out that there are no pediatric vascular surgeons; it's just not a specialty at all. And it's hard to get a doctor who sees adults to see a child! Well, my son was 13 when I started calling them. Now he's 14, so hopefully he's getting closer to an age when they will accept him as a patient!

Serial Casting Results

The serial casting went really well! His feet are a lot flatter, and his right foot, which was going in, is straighter. Also, he is not getting the red spots on his feet that he was getting from his braces because they fit him correctly again! It is amazing that we could do this in just 3 weeks. Here is a before and after photo. I never take them from the same angles, ughhg, but these two are really close for comparison.

Serial Casting: Weeks 1 and 2

Jordan is going through another few weeks of serial casting. His feet are just not flat anymore, and he is standing on his toes. Also, his left foot is really rotating in. Hopefully the serial casting will do something to put off more surgery and will keep him doing as well as he's doing.

Here are his feet before the first casts were put on. Notice how he is standing on his toes. He can't flatten them. It's hard to flatten them all the way if you push on them, too.

He is going to have these casts on for 2 weeks. This Wednesday will be 2 weeks, actually, so I'm eager to see what his feet look like so far. The PT thinks it will take just a few casts, and they will definitely be done before school starts. I am hoping we will have at least a week or 2 at the end of the summer for more swimming when he is out of the casts!

This shows how he just goes about doing everything he usually does while wearing the casts.


He actually got some wood chips in his casts that day at the playground. I hope I was able to get them all out and that when they cut off the casts, a whole lot of wood chips don't fall out!

I'll post more photos after he gets the casts changed this week.

Cool Research: Walking Devices

I've seen a lot of very exciting new research lately about walking devices. First is Mini-generator Relies on the Power of the Walk. "Strapped to the knee, it could use energy generated by walking to run medical and other devices." I think if they could do this, they could surely use this on an orthotic or prosthetic to help in walking.

Then also, Prosthetic Limbs Give Wounded Soldiers New Life. This is another exciting development--these prosthetic limbs pretty much walk on their own!

Of course, I'm thinking about the way things like this could be used in people with CRS/SA. I do think there is too much emphasis on walking sometimes. If someone can get around in a wheelchair, with orthotics, or whatever, that's great. But if something like this can help people have more mobility and independence, that would be a good thing.