Tuesday, June 4, 2013

Ten little fingers

This was as good as the hand pictures got.
In my post about Eli's feet from a few days ago, there were a few people who were curious about his hands. I mentioned in that post that we haven't started the hand surgeries yet, but I thought I'd write a little something about his hands, what the plan is for them, and the long-term prognosis.

It's hard for me to talk about Eli's special needs without comparing them to Rosie's. When we got Rosie's referral, we knew enough about cleft lip and palate that we felt relatively prepared. We also knew that once she was done with her series of surgeries, she would, in totally crude terms, be fixed. Her lip and palate could be repaired, her speech could be practiced, her nose could be straightened, she could get dental implants, and by the time she was a teenager, people might never suspect that she'd been born with any special need at all.

When we got Eli's referral, we knew we were facing a different situation. Lots of adoptive parents say that limb differences are very manageable special needs, because kids are so resilient and usually adapt and make what they have work. The parents often say that they forget their kids have special needs at all. But unlike Rosie's lip, we were never going to be able to totally fix Eli's fingers or toes. As a best-case scenario, he might eventually, after surgery, have the use of both hands with some longer fingers and some shorter fingers. As a worst-case scenario, he might not have much use of either hand. We wouldn't know more until we went to China to adopt him.

Sucking his fingers
When we arrived in China, one of the first things I did was look over Eli's hands. His left hand is his "good" hand. He has a full pinky finger (his only finger with a fingernail) and about 90% of a thumb. The three other fingers are all short and banded together. It looks like he has about 75% of two of the fingers and about half of the third. This hand does everything. He has a great pincer grasp, feeds himself, colors, uses a fork-- you name it.

The right hand is, even now, a little bit of a mystery to us. When we saw pictures of it, it looked like a ball of flesh, and we weren't sure if there were any fingers there at all. Sometimes it looked like he had part of a middle finger, but honestly we weren't expecting much. But it turns out that he has at least half of all five of his fingers. The middle finger is basically a normal length. The four other fingers were banded together at the tips. Part of each was amputated in utero, and the fingers are webbed up through the first joint, but they appear to have bone structure. We won't find out about tendons until the surgery later this month. Eli uses this hand for support. He can pick up small items (goldfish crackers) with the middle finger, and uses it to point. But we were delighted to find that the bones are there, and eventually we hope that it opens up like a flower blooming. There are two tiny pieces of skin, each about 1/4 inch long, holding the fingers together at the top, and it kills me a little bit that he has lived for 19 months with his hand like this-- removing those two pieces of skin would be simpler than taking off a mole, or performing a circumcision. Snip, snip, stitch, stitch, and he would have five fingers (webbed, yes, but still fingers).

You can see his powerful pinky in this shot
So what's the plan? On June 20th he will have his first surgery on his right hand. The surgeon will snip the bands between the fingers, and bring down the webbing between the thumb and pointer finger and between the middle and ring fingers. He will have outpatient surgery, followed by four weeks in a cast to protect the hand while it heals. Our surgeon is expecting that he will have four surgeries in all, two on each hand, all followed by casts. Apparently, it's not a good idea to operate on both sides of the same finger in a single surgery, which is why we have to have two surgeries on each hand. My guess is that it will take at least a year to complete the entire process.

And after it's all done? We hope that Eli will have ten (little) fingers, and as long as he doesn't want to be a hand model, no one will be the wiser. Hopefully, his hands won't be an object of fascination and revulsion to the kids he meets like they are right now. Regardless, we know that he won't be stopped or limited by his hands, because they don't stop or limit him in any way right now.


Anonymous said...

Shelah, Eli is a wonderful little boy, loved by his family (and extended (NASHVILLE)family, who can't wait to meet him. You will equip him to deal with life head-on and he won't be limited by physical limitations ... Surgery in June instead of July 3, I guess! We'll talk timetables soon.
I love you all, GrAnnie

jackson Lee thompson said...

My kids were fascinated by this when I told them about it and showed them Eli's pictures. He is such an adorable boy, and we all hope that his future surgeries go well. My kids will enjoy seeing his progress....
PS - Do you have marble countertops (looks like it in the pictures)? Do you like them/would you recommend them? Thxs.

jackson Lee thompson said...

Oops, this is Sarah Thompson, not Jackson! :)

Shelah said...

Hey Sarah- We have marble countertops on our kitchen island and in our bathrooms. I really, really like them, but I decided when we moved in that I was not going to baby them. So they have a few stains, and I don't seal or buff or maintain them in any way. Still, I think they look pretty great.

Anonymous said...

Our neighbors adopted a now-8 yr old Chinese boy who is missing a forearm...and you would never know it. It doesn't slow him down in the least and he is the happiest, most confident kid I've met. No doubt with your loving family Eli will blossom similarly.