Evan Hand(s) Update

On Thursday, we drove down and around to Seattle Children's Hospital to see a recommended hand surgeon for Evan. Since Evan was born, there has been an overwhelming interest in his left hand. It is only because it looks so different. Doctors want to see him. They want to show him off to all of interns and fellows. It is a birth defect not seen often and they all love to talk about the possibilities of surgery. The problem is that they don't slow down to think about the big picture. Now I'm not saying I'm a genius, but I constantly ask questions. I especially like to pick the brains of the therapists. Will he ever be able to move his elbow actively? If you move his wrist onto his ulna (wrist centralization surgery), will he lose function of some fingers? Would we really want to do the surgery if he has a short ulna?

I feel like the first couple of surgeons we saw weren't listening to me. The "best surgeon in the country" was recommending the surgery, yet she never questioned the future function of his elbow. If we straighten out the hand and he can't bend his elbow, isn't that removing function from him?? (There is currently no surgery done to improve elbow function.) I feel like she brushed me off. And she didn't even want to talk about his right arm, though she mentioned that she would in the future. What does that mean? Does she think I'm stupid and won't understand?
Sorry, I had to vent about that. This surgeon we saw Thursday seems better. He looked at Evan's elbow and his X-rays and agreed with me. He actually said that doing anything to his left arm would be inhumane. Thank you, hallelujah, this is what we've thought all along. He wants to concentrate on his right hand and arm. Evan's right hand does not bend back as far as a normal hand. There is something preventing it from doing so and we have not been able to get a surgeon or doctor to be concerned about this. Finally and answer. It looks like that, most likely, the radius bone on his right arm is slightly shortened and causing his hand to turn slightly inward, and hence, his hand has a hard time bending back. Wow, I can't believe it took a year to figure that out. This could mean a bone lengthening surgery when he is six or seven and maybe another one when he is older.

Also going on with the right hand is his thumb, which has been called triphalangeal (finger-like). The thumb is smaller than normal and the base of the thumb is not as strong.

In order for the thumb to be completely functional, a surgery would be needed to give it support. This would be done by moving tendons around. Or, if this cannot be done successfully, TBD soon, we would possibly do pollicization the surgery. This involves removing the thumb and turning his index finger inward to act like a thumb. This is an extremely successful surgery that has been done for 30 or so years. It seems crazy to do, but kids learn how to use their new thumb in no time and you can't really tell that they are missing a finger. Either surgery would be done by the end of the year.

I have to mention that Evan, even with all of the hand/arm/thumb/finger issues, can do still do everything that any other kid can do. He is such a typical boy, which I never thought I would say. He tries to take everything apart and has successfully taken off baby-proof caps.

Anyway, the hand surgeon is drawing up a plan and he will observe Evan and go over his recommendations with us in two months. And that's that, I guess.

Both kids have been projectile vomiting this week. Amelia only twice, but Evan couldn't keep anything down for two days, so we had to take him to the ER to make sure he didn't get dehydrated, what with the one kidney and all. If that isn't enough, we're dealing with all of this living out of a hotel room, so if I haven't called you back, you know why!

Now I have to deal with the military clinic and insurance this week trying to get 10 different referrals and moving into our house on Tuesday. And of course waiting for the Direct TV guy on Wednesday. I have to mention this because it will be one of the best days ever. I can't believe I had to live without my Tivo and all those channels for 10 months. How did I survive? Not that I even have time to watch T.V., but when I do I certainly don't have time for commercials. Things are looking up!