My Twin Madness- Homeschool Edition: April 2010

5/23/12- I wanted to update, since so many find this page still. Evan is 4 now! Here is a recent blog post of a new splint and update:
http://mytwinmadness.blogspot.com/2012/05/medical-stuff-with-my-superman.html

* So many of you find this blog post from all around the world, but there is no site where we can discuss and talk to each other. I decided to start a Google Group. Please visit and join!:) http://groups.google.com/group/radialaplasiakids * -Ok, this didn't work out too well, so many come to this page, but no one joins this group. Oh well.

Well, that title ought to get the correct "googlers" out there!

Two or three times a week, I get people on this blog who have googled "apple juice and milk" or "bumble chair", which are titles of past blog entries. So I figured this title might get people who desperately are searching for information of limb differences that Evan has.

I have been searching for information since I found out Evan had limb differences in the womb. I did not find much. Throughout the past couple of years I continue to not find much. I have found people here and there that have the same type of limb differences or have children with them, but not anyone to talk to about it or who responded to me. I find it disheartening that there is such a huge disconnect between people that are going through the same thing. So if there is someone out there seeking answers, this is for you. And please feel free to contact me!

One of the most important things to be educated about when having a child with limb differences are the splints or braces that are made to help in the developement of the limbs. Since Evan was born, I have lived in 4 different locations across the country and seen 4 different upper limb/hand specialists/surgeons. I can tell you that there are without a doubt different levels of hand surgeons (and thank god I got a third opinion). I can tell you that many pediatric therapists do not have experience with these children and babies. I can tell you that some don't even know what kind of splinting should be done. I have come into contact with parents that don't even know their baby/child should have splints made immediately. I only know this because a therapist came to see Evan when he had is heart surgery and was shocked that he hadn't had a splint yet at 2 months old. And we saw a pediatric hand surgeon when he was a newborn!

Rule #1 parents: Hand/upper limb surgeons don't care about splints!! Only one of the 4 we saw even suggested it!

OK, here are Evan's three splints.

The first is a night-time splint. This splint is almost straight now (well, 20 degree angle), but started at a 90 degree angle when he was a baby. Hopefully we will correct the splint to 10 degree angle soon.

This is the splint he uses on his other arm, it is a post-op splint for after the the thumb pollicization surgery. The first splint was horrible and the thumb kept slipping out. We saw a different person that made one better. The thumb is very secure and held in the correct position with this splint. One month after the surgery, he began only using it at night and will continue to do so until 6 months later.

His third splint is one that I requested to have made. I refer to it as "the sports brace" because I wanted it for when he is outside playing. He has a hard time with falling and started to hurt his wrist, or point. The surgeon told me this wasn't necessary, but I don't agree. Any kid who rides a bike or has rollerblades has wrist guards, why shouldn't Evan? It's just rediculous. So I came up with the idea of a guard for this "point" area and had an OT make it for him. It's basicaly a dome with shock absorbing foam inside.