Monday, June 3, 2013

Cast Away

Today is National Clubfoot Day. Today was also a big day for Eli, who got his fifth and final cast off his foot after eight weeks. What follows is a little bit about the process of clubfoot casting:

One of our first pictures of Eli-- it shows his clubfoot well
When we accepted Eli's referral last year, his clubfoot was almost an afterthought. We were so much more concerned with the fact that he's missing a big toe and that we couldn't tell what was going on with his hands (not to mention the fact that we'd only had Rose home for four months and couldn't quite fathom starting the process over again). For most of the last year, Eli's hands have been our biggest preoccupation, because they seemed like they might have the greatest impact on his daily functioning. But since we've had Eli, he's proven us wrong at every step. He doesn't let the fact that he only has one working finger on his right hand, and three digits on his left hand stop him one bit. And he hasn't been fazed by his clubfoot treatment either.
We are very lucky to have both Primary Children's Medical Center and Shriner's Hospital for Children less than 15 minutes from home. We had heard wonderful things about the treatment plan at Shriner's, and got a great referral for an orthopedist (Dr. Hennessey), and they were able to start his treatment a little more than a week after we returned from China.

Most children with clubfoot are treated very shortly after birth. The preferred method of treatment is what is known as the Ponseti Method, which involves a series of casting, which the kids wear for a week or two at a time. So we were at Shriner's every Monday for the last few months, gettting Eli a new cast. We let the big kids pick the cast colors, and Eli sported, at various times, blue, orange, kelly green, purple, and lime green casts.

The first week, we had x-rays of Eli's foot and got the first cast. His clubfoot was pretty mild, and related in some way to his other limb differences (all are a result of amniotic band syndrome, where parts of the amniotic sac strangle off digits or entire limbs). We were told that he would have somewhere between four and six casts, each that stretches the foot a little bit more. We're so lucky to live nearby, because most of the families who come to Shriner's travel long distances (Colorado, Wyoming, Idaho) with tiny babies.

While there are many advantages to our situation, Eli's age was a significant disadvantage. Newborns are less likely to have a hard adjustment to the casts, but the first few nights for Eli were murder-- he was up at least 100 times a night for some of the first week. Newborns' bones are also more pliable, so while his clubfoot was mild, it wasn't going to be as easy to reshape it as it would be with a newborn. And walking with a cast is a lot harder than being carried around with one like a teeny baby.

But Eli came through it like a boss. He wasn't a fan of the actual casting or uncasting, but he figured out how to run around on the toe-to-hip cast, and how to stand up with one leg fully unable to bend. He also rarely complained when the rest of the family hopped into the pool and he had to stay on the side and splash with his one good foot.

We got new x-rays on the day Eli got his fourth cast, and Dr. Hennessey decided that he would need a tendon release procedure in addition to the casting. There are many different reasons why a baby might be born with a club foot. But for Eli, we were fairly certain it was because of his amniotic banding. However, he also has a fairly significant band on the calf of that leg, and the doctor thought that the band was making it difficult for the tendon to stretch the way it should. So four weeks ago he had the procedure. Newborns have the procedure in the clinic, but because of Eli's age, his was under general anesthesia. He did great, woke up happy, gobbled down two yogurts and two containers of Jello, and was home by lunch.

Shriner's is a fantastic hospital. In fact, it doesn't feel like a hospital at all. We got to know the staff well because they took care of us week after week, and they'd all say hi and call us by name when we showed up. While Eli had his surgery, I got to wait in our private room (even though we went home the same day) instead of hanging out in a general surgical waiting room. We had a wonderful experience there.
First tub bath in two months
So now what? The casts are off, but in some ways, it feels like the process has just begun. Today Eli was fitted for his boots and bar today. He has to wear special boots with a snap-in bar for 18 hours a day. Once again, if he were a newborn, this would be no biggie-- but for a walking toddler, it feels a like a big deal. In three months, he'll only have to wear them at night, but I know that for the next three months, I'll be trying to squeeze out every minute in the boots and bar so he has plenty of time to run and play too.

In the beginning, I was really worried about Eli's hands. I was devastated when I found out that we wouldn't have hand surgery until July (now moved up to June). But in some ways, it's been nice to get this casting process out of the way before he has casts on his hands too. But I'm happy to report that when the cast came off, Eli had two beautiful, straight feet. Feet that are perfect for walking on.


Afton said...

What a story!! I am impressed with all you have been able to endure and still manage to run and stay sane! I just remember you running with the cast in the stroller in Houston too, nothing stops you! Poor Eli, that sounds like pure torture. I don't understand the bar thing--can he just not walk then at all with that on? He just has to sit all day? What a huge journey. What kind of surgery for his hands? Does he have fingers on his right hand that exist but don't work? You guys are amazing!!

emlouisa said...

What an amazing kid to go all through this!!! And what an amazing family. Eli is so blessed to have you guys and I'm sure you feel the same about him!

Love ya Shelah!

Becky K said...

Shelah - my son had a clubfoot when he was born (he's almost 12 now.) We spent 5 months doing Ponsetti casting at Salt Lake Shriner's (so much for 6-8 casts.) We go once a year now for my son's check-ups and it's like a family reunion. Good luck with Eli's treatment.