When are no hands better than two hands?

"Today," would be Eli's answer.

Eli and I sat in the casting clinic at Primary Children's Medical Center for about an hour this morning. We watched kids come in with casts on their arms and legs, and worried looks on their faces. "Will it hurt?" they asked. The parents assured them that it might feel a little weird, but it wouldn't hurt. "And besides," more than one said, "when you're done, you'll be able to run and jump and everything." When they returned to the waiting room, plenty of parents had big smiles on their faces, but all of the kids looked stiff and uncomfortable. No one ran down the hall or jumped. "Darn it," I thought, "I forgot about this part."

I shouldn't have forgotten. Eli got out of his last cast only six weeks ago. He's been in nine freaking casts, for goodness' sake. Add to that the three the other kids have been in over the course of their lives (including TWO spica casts for Isaac) and I have plenty of cast experience as a parent. But I had been so focused on today, the day marked in red on the calendar as the end of the casting ordeal, that I had forgotten that, for Eli at least, today wasn't going to be any fun at all.

We finally got taken back to a room, and the medical assistant took off the outer layer. Eli screamed. Then she left and I soaked the bandages again. They've been smelling really funky for a few weeks, but I figured that was mainly because we'd gotten them a little wet a few times. When she came back to take off the inner layer, Eli screamed more, and within seconds, a putrid smell filled the room.

I am not a barfer or a gagger (30 years and counting!), but that smell was so horrible, I needed fresh air. But I couldn't act distressed, because Eli was in such a state. He's been a little bit upset when he's banged his left hand funny over the last few days, but he had a pin in one of the fingers, and I chalked it up to that. But unfortunately, the skin graft on that hand didn't take, and there was a whole bunch of nasty, dead skin covering his fingers.

The poor kid cried all the way home. He usually sucks his thumb to soothe himself, but there was no way he was going to put his fingers near his mouth. I plopped him and Rose in the tub when we got home, and he refused to put his hands in the water. Finally, I had to take them both out, put Rose down for a nap, and then hold his hands under the water to get them bathed like I was told I should. I took him down for lunch, and he wouldn't even try to touch the food. I should have remembered it would be like this-- for the next three or four days he's going to need me to do everything-- hold his bottle, feed him, and play defense with Rose. He sees a hand therapist next week to look at the grafts and see if they want to put him in a splint.

Today's experience reminds me a lot of what we went through on the day Eli joined our family back in March. I was so excited. It was a day I'd anticipated for almost a year. But it was tragic for Eli. He was so confused and unsettled and sad, and it was several more days before we saw glimpses of who our little guy really is. We also had our visit with our social worker this morning for our six-month post-placement interview. She remarked that things seemed to be going better than they were at the one-month visit, and while that's definitely true, I also feel like this is a similar sort of experience. Getting surgery on Eli's hands was absolutely the right thing to do, and the long-term consequences will be fantastic, but taking off the bandages was also painful. In much the same way, expanding our family has been and will continue to be one of the defining choices we made as a family, but I still feel like we're in the weeds of the experience.

Another thing I remember, when pressed to remember the hard things, is that it always takes a few  more days than I'd like (or a few more months, in Isaac's case) for the kids to make a full recovery and begin using the part that has been casted. I think that's also true of our family-- I'd like everything to be easy NOW, not in six months or a year. But just like Eli's foot is now awesome, and Isaac's leg and Bryce's arm look like nothing ever happened to them, his hands will one day be great too, and so will our family life with six kids. Or at least I'll keep telling myself that it will.

Book Review: Five Fingers Ten Toes by Katie Kolberg Memmel

Title: Five Fingers Ten Toes: A Mother's Story of Raising a Child Born with a Limb Difference
Author: Katie Kolberg Memmel
Enjoyment Rating: ***
Source: Kindle for iPad
This book would be rated: G

Most of the time, it's hard for me as a reader to separate the writer's craft with the story itself. I think this is because I read a lot of fiction, and the manner of telling the story is often integral to that story. However, Five Fingers Ten Toes is an example of a book where the information presented is fascinating (to me, as the parent of a child with limb differences) but the craft of Memmel's storytelling detracted from the story itself.

I have to give Katie Memmel a lot of props for writing the story of raising her son Tony, who was born without a left forearm and hand. Tony, now a musician and an accomplished guitarist, has certainly lived a remarkable life, and his mother's experiences undoubtedly helped shape that life. But this is a book written by a mom with a story, not by a writer. For example, she starts the book with an extended discussion of why she decided not to attend college, which is something that doesn't seem to have much relevance to the rest of the story. She goes on to talk at length about family vacations, etc... These details, while possibly interesting to someone who knows the family, was not interesting to an average reader. That said, there is such a dearth of stories written by parents of kids with limb differences that I do feel that reading about Memmel's experience was useful. She talked a lot about the community of parents of children with birth defects, and she's definitely contributing to that community in a meaningful way. But reading this book also gave me some indication that I might be able to do something similar and to do it well. 

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.