Monday, January 4, 2010

Squittens and Squoys? Twisty cats and boys?

I'm writing a blurb for the rodeo crowd, to be read during our carriage ride in the arena by the announcer. I just googled radial hypoplasia, the fancy name for Brody's arms. A bunch of cat websites came up.

Do you know what radial hypoplasia in cats is called?
Guess.
You'll never get it right.
Also, Squitten. Because the cat resembles a squirrel with its unusually short limbs. That's how Wikipedia explained it, at least.

Sometimes the cats are bred for the twisty squitteness.
I don't know whether to laugh or cry.

Would Brody be a Twisty boy? Or a Squoy? I've called him monkey and Mr. Potato Head and Brodary, but never, ever did I think he looked like a squirrel. What the fuck?
Here are the photographs we sent to Shriners, by the way. I'm trying to do a clinic appointment over email because I do not feel up to flying to Salt Lake and back in one day to be told that he needs more surgery several months down the line. We know he does. The question is when and for what, re-straightening of the right hand, tendon transfer, what?

This is when we first got him home, about two months. I had forgotten how amazing his right hand was. Try and bend your hand into that position. It hurts. It doesn't hurt Brody.


First professional pics, and his beloved dog. The scar on his right hand that you see is from the [non-Shriners] doctor, DOCTOR, cutting his cast off straight through his skin. Just one reason we do not see her anymore. 8 months old I think:

Splinted from 4 months on:


Christmas photographs at 14 months. Splinting had helped, but when we stopped, the arm crept back into its unstretched position.



Ahhh. . . . post-thumb, restraightened, with a metal rod drilled through his ulna bone to keep it straight. His arm looks ridiculously long to me here:

A couple of months later, the pin about to break through his skin, as it had "backed out" of his ulna:


And now. No pin, no splints that he will keep on. The good news is the regression seems to have stopped at this point.


Me? I don't think it's that urgent. Ultimately, when he reaches skeletal maturity (age 17 or so), Shriners will fuse the wrist into place to keep it straight. We can't do this now because it stops growth, and we want all the growth we can get.
The right hand really is so much better than it used to be. And he is using it more than he ever has. Not his thumbs, mind you, but his hands. I'm sick of surgeries, and I'm sick of putting Brody through so much.
Jeremy wants it surgically straightened again. As soon as possible. He is worried about school, and teasing and Brody being ostracized.
I am too. You know I am. But I am fatigued.
How do you resolve that one in a marriage?

6 comments:

NotSoAnonMom said...

Oh, sweet little Brody.

That's a tough decision to make, and I wouldn't know what to do, either.

Robyn said...

I don't know a kid who didn't get teased in school for something. I think it's more important to teach kids how to deal with it with self-esteem intact than to try to protect them from it completely.

I got teased in kindergarten because of my name... Jingle bells, Batman smells, ROBIN laid an egg!... yeah, funny. I got way-more-than-teased (more like completely ostracized) later because I was the top student in my class and I didn't care to pretend to be dumb just so that a boy could have that honor. It was tough, but I got through it, thanks to good parenting.

Brody will get through it too. With his beautiful smile and beautiful spirit intact, also thanks to good parenting. :-)

SaRaH said...

I meant to comment on this right away but my squitten research got the best of me. You may be interested to know that "It is not genetically possible to create a hybrid between a cat and a squirrel." I think that either decision is a good one. And girl, I hate to throw a wrench into the thought process BUT... when I was fifteen, my surgeon wanted to do one more surgery on my chin. It was to be purely cosmetic. I had just gone through major surgery and recovery and declined the opportunity. It's the only craniofacial surgery (out of over 15?) that I regret. I mean, if it would have made me prettier would it have therefore made my life a little easier? If yes, then it would have been worth it in my opinion... I'm never helpful.

SaRaH said...

oh, and those baby pictures are the BEST.

Tracy said...

Aww. that's the first time I've seen a tiny Brody picture. LOL.

Its a hard call because really its not an emergency surgery. I would say if its not impacting function to let alone for a little while.

Maggie's right hand has seem to be turning in a little more usual lately as well(intersting this topic came up on your blog),. and I sat and wondered if we should do something about it yet. I can't find it in myself to do the thumb surgery yet , amazingly enough. Its your call but one of the VACTERL adults when I asked about living life without a thumb( or even thumbs there were some there that didn't have thumbs on either hand and amazingly functioned just fine,, just had to do things a little differently) asked me if Maggie functioned fine with not having her thumb. Of course I answered yes because she never knew any different. She said well as long as she never had a thumb to begin with and she functions just fine then let it be. Really they don't see themselves as any different then anyone else.

Really if you get a chance it is a wonderful experience to meet these young VACTERL adults at the conference. Really the VACTERL conference isn't all medical its a wonderful experience when you go. You gain so much more information and such wonderful friendships, and its a HUGE plus to see the little ones, then the toddlers, then the younger children , then the teenagers and then the young and older adults. You are seeing VACTERL at every stage and its a great feeling to see how these children grow up to be. They honestly don't see themselves as different , even if they were teased in school. I think it had to do with the level of support they had with their family that made a difference.

As for the kids , if its not his hands it will be something else they will pick up on. Children can be mean no matter what. Either your too skinny , two fat, have glasses, don't wear the right clothes, don't have the right sneakers... etc, etc, it just goes on and on. I find that many parents do not teach their children sympathy , or teach them at all. If you teach Brody to be confident in himself that will be all that matters. Unfortunately the evils of teasing can't be prevented when they go to school, though it can be much lessened if you homeschool :>)

www.caringbridge.org/visit/margaretreed1

Amanda said...

Wow, it looks like your family has been through a lot. My Eli has never been given a firm diagnosis of VACTERL but he still qualified for a study at the NIH. You might want to look into it. The people here are amazing! The doctor running the study is Ben Solomon and he is just great. If you are interested in it, you can give them a call. This is the website: http://clinicaltrials.gov/ct2/show/NCT00766571