Thursday, October 8, 2009

St. Louis, The Good, The Bad, And The Ugly

We are back from St. Louis with an interesting update.

First of all, the good.

We were sitting in the waiting room at the hospital. I was reading my book when Matthew said "Mommy! I see my friend D!" I told him, no that I didn't think he would see his buddy there. (He made a friend in St. Louis his first trip there in May and saw him a lot) I looked up and sure enough, there he was! Talk about fate! We had all flown in for an appointment that day without knowing the other was there. The boys were thrilled to be able to see one another again and to play at Haven House later.

The other good... Dr. Dobbs was happy with Matthew's foot. He said it still looked good.

The Bad

Matthew's heel cord has been getting tight despite all the p/t. Dr. Dobbs thought it would be beneficial for him to spend a week in a cast. Get a good long stretch. Matthew was really upset about this. He really didn't want a cast again. He had some tears when we were left alone. He cried because he would miss swimming. He cried because he didn't want to fly again with a cast. He cried because he wouldn't be able to do the monkey bars. He cried because he didn't want to have to go to school in a cast. But, by the time we made it to the cast room, he put on his brave face and sucked it up better then any adult could. Have I ever mentioned how proud I am of him? :)

The Ugly

Dr. Dobbs intern came in first and had Matthew walk. He immediately felt Matthew's hips. It was like a huge light bulb going off... leg length discrepancy. Sure enough. Matthew's left leg (clubfoot leg) is 1/2 inch shorter then his other leg. The X-rays they took when they removed his cast in May show it clear as day.

Why is this the ugly? Maybe because I am so mad that his surgeon here of 6 years never once measured for it. Never once mentioned the possibility. Never once said that clubfoot with neurological disorders often have leg length discrepancies. SIX years... not once. And Dr. Dobbs found it in Matthew's first post-cast appointment.

What is really ugly is that perhaps, if this had been caught earlier, he could have been wearing a lift in his shoe for a long time and maybe, just maybe it would have slowed his regressions or (maybe this is wishful thinking) prevented some of them.

I was able to pick Dr. Dobbs and Kristina (his nurse)'s brains while they casted him. Dr. Dobbs said that yes, it is possible that with the lift, it could reduce the regression. That his running/walking with his foot turned in could be due to the leg length difference. He also said that one day, Matthew WILL be done with casts. It will happen, he just can't tell me when.

Those were the most beautiful words I have heard in a long time. I told him I was going to hold him to that.

I have to say, Dr. Dobbs and Kristina are such a wonderful team to work with. We have been so lucky to have found them.

So Matthew got his cast (red with a green stripe - his choice) and it is straighter then any of his previous casts. It has made it difficult to move and impossible to reach his foot, but I hope, a better stretch.

Then, off to orthotics to get his brace fixed and to get a lift on the shoe that we had with us. The entire black portion on the bottom is the lift that was glued to the shoe. I have an appointment to take his other shoes in here to have lifts put on them.



Then, back to Haven House to play with his buddy.


What is under the cups? Why praying mantis's of course!


We are now back home and Matthew has not complained once about his cast, save for this morning when he said he had to show me something. I took a peak at his big toe. It was covered in dried blood. The fiberglass was a bit too long and digging into his toe. I got out the scissors and cut it back. He said thank you and ran off to play before school.

Man... that kid is one tough cookie. Makes my heart swell with pride.

8 comments:

Jennifer said...

Your son is a tremendous kid. What wonderful news.... even the ugly can be and is now being addressed. What a wonderful find in Dr. Dobbs! Glad to have you back too.

Sympathypains said...

Glad to here a mystery was unraveled. I hate when doctors miss something that should be, to the trained eye, obvious.
Tony's leg, at 22 months, is about 3/4 inch shorter than the other. By the time he is 9 it could be close to 2 inches...Nothing we can do about it until his growth plates start to harden and fuse, then we will operate.

Sara said...

Well, with all that said it sounds like the trip went well. As for the ugly... at least you know now and can work forward from this. And how very wonderful that Matthew's friend was there at the same time. What a very special thing to have happen. xx

Unknown said...

Wow what an amazing little boy you have. Glad to hear that the trip was well worth the effort and yes one day he will no longer have to have a cast. Something to remember.

I also have a leg longer, at this time it is 1' 1/2 longer.

Mrs. Bird said...

I'm glad there is good news mixed in with the ugly. What a brave little guy you have!

Allie said...

I'm so glad Dr. Dobbs said things are looking good and that hopefully the lifts will help Matthew! I hope the casting goes smoothly, you have such a tough little guy!

Anonymous said...

You should be proud of Matthew, such a little trooper and such a wonderful mommy for seeking great treatment for him. It's wonderful when you get a moment to pick their brains about the future....on our first visit Dr. Dobbs told us that Levi will live a wonderful full life and that he treat the foot/nerve damage. That was also music to my ears coming from a scared mommy who was going thru alot of docs who didn't know anything! :) Jamie

Sue said...

Welcome back!!

After reading your post, I realized that I had been half-holding my breath all the while you were gone ... wondering what news (good or bad) that you would come home with. You just never, ever know what to expect! I'm glad you did receive some good news in the midst of it all. It looks like the overall picture is pretty encouraging, minus the few bumps in the way. Yes, a cast stinks -- but at least it's only a week, and you know that will zip by quickly! Don't tell me you have to fly back in a week to have it removed ... Can you do it yourself, at home? I hope so.

What a tough little guy ... He's allowed those few initial tears. I'd be crying right along with him. Keep your chin up! The outlook is bright!