Radial Aplasia, Missing Radius, Pollicization Splints/Braces

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.

Please feel free to contact me if you have questions, or maybe you find I am missing information!!

Hoppy Easter!

Hope everyone had a great day.  These are from a week ago.  I knew that the sun was going away for awhile, so I planned ahead and took them early.  More to come.  My sister and nieces are here and we are busy, busy!

Easter Sunday, taking the ferry to Seattle Pike Place Market with the kids.

Miss Ailey, cutie pie.

Genevieve, Evan, and Amelia. And some snacks.

Let's Talk About the Zoo

Last fall we got a zoo membership for the family. This means that anytime it is decent outside, the zoo is open, and we don't have therapy on that day, we go. As the days get nicer, more and more people are going to the zoo, getting in my way, and taking up my close parking spots. I don't like it one bit.

I wouldn't mind people if their kids weren't weird. We always end up near the grandmother with the grandaughter who stares and follows the kids around. Or the little boys who push the kids down in play area.

One little boy, about 6 or 7, put his leg out in front of the stroller to try and "trip me". Another boy, about 10, almost hit Amelia in the head with a wooden airplane he was flying. Why would he have his wooden airplane at the zoo? I don't know. To specifically hit me with it, probably.

How about the flock of cigarette smoking moms pushing strollers down the wheel chair/stroller ramp that didn't move to the side to let me go UP?

If you are annoyed by people and are thinking of a zoo membership, make sure to follow these rules:

1. Check the school district of nearby counties to make sure kids are in school. This is the sole reason I am writing this blog entry.
2. Check the weather. You don't want it to be too nice. If you live in WA state, don't go on the first sunny day in awhile.
3. Don't be afraid to go in the rain. You will be the only one there.
4. Go as early as you can. Although you will have to fight the cigarette smoke strollers to get the hell out of there when the crowds come.
5. Bring a wooden airplane to throw at people when they annoy you.

Thanks for listening...

Just to add (non people related), I got a large chai latte on the way out that cost $4.20.  When the crapista gave it to me, she "left some room" at the top so I wouldn't spill it. About 75 cents of room. Why? Remember: most zoos don't allow plastic lids or straws. So I had to push a double stroller with one arm up the hill (the zoo is built into a mountain of a hill) to the car, through the smoking strollers, the other arm carefully holding a piping hot latte!

I Got Nothing

I really have nothing to say. We've been trapped in the house because Evan has had a runny nose and was coughing. According to pre-school, that is a dangerous situation. Things are finally getting back to normal. Back to school, therapy, and doctor's appointments. So I'm sure I'll have something to say soon. Until then, here are some videos and pics to fill your "I need something cute to look at" needs.

Giant cedar at Point Defiance. What a comfy tree.

I told him to give me his cute boy face.

The difference in my twins' feet.

Whack-an-Evan

Disneyland Anonymous

Is it normal for a 2 year old (barely 2) to be obsessed with Disneyland? Does the addiction start this early, or is it just my 2 year old?

When we went to Disneyland last October, people kept saying, "Well, she won't remember anything." Which annoyed me. Of course.  Because it's not about what she remembers when she's 20. It's about what she's experiencing in the moment. And me witnessing it.

I just noticed I am using the term "she". Of course my Amelia is the one with the affliction! She's a girl, a smart cookie, who still remembers a lot about Disneyland.  Since we left the park, she has been talking about Mickey kissing her and seeing Goofy.  Yesterday she said to John: "Daddy, I want to hug Pooh again. And Tigger."  She talks about riding boats (It's a Small World) and tea cups and elephants. Her favorite show is a Disneyland sing-a-long with the real characters marching through the park. She loves Mickey's Clubhouse and My Friends Tigger and Pooh. She even knows the minor characters. I mean, she even knows who Pete is. Pete!

It just so happens that John gets some days off in the spring. And since it's only a two hour flight, hmm.... I wonder where we'll be!

Amelia tucking in her Disney pals for night-night:

No news is good news... right?

The letter V in VACTERL is proving to be a difficult letter. Last week, Evan had a CT scan to see how the two vertabrae are coming along (extra piece in the middle of his back and one in his neck).  Since he was born, we thought for sure we would be having a surgery to fix the one in the middle.  Turns out the extra piece isn't affecting him yet.  Often the spine starts curving at more than a 10 degree angle and then an operation is certain.  But Evan is chugging along with a less than 10 degree angle and there is a good chance he will stay that way.

It's the little bugger in the neck that we are worried about.  We were never even told about it until last year and now it is a waiting game. I don't even know what we are waiting for.  I guess 2 year olds don't have fully developed vertabrae in the neck.  So we are waiting another year to see how his spine up there in his neck develops. And what if it develops wrong? Then what??

The doc said that he is doing amazing and there are no restrictions for him.  Jumping off the couch and doing backbends? Totally OK!  So I will try to not be stressed out about it.  I'm sure when I get the surgeon's notes in the mail I will google everything and freak out. But I will try my best to just be happy and enjoy life with him.