The other day, I took Drew to one of his yearly specialist checkups and, for lunch, we stopped at a local Mexican restaurant, Drew’s favorite food. Drew sat across from me and I watched him eat a slice of lemon. He held it using both hands, twisting it around to get to all of the juices and I intently watched him, at times, enjoying his sour faces, but mainly concerned.
In about 10 weeks, Drew will be undergoing a surgery that will stabilize his wrist, straightening his wrist in a more natural position. This is the first step to arm lengthening, which Drew has decided himself he wants to pursue. So, this sounds wonderful and could provide many opportunities to Drew to become more independent, but holding this lemon in his hands, with his right hand bent forward towards his left hand, it suddenly occurs to me that this unnatural bend in his wrist probably helps him hold things between his extremely short arms. And, we’re fixing to remedy that. Will he be able to hold a small object like this in both hands after we do this surgery?
Watching him eat his dinner with his fork and the position of his hand works in his favor right now. Will he be able to use a fork after we remove that seemingly evolutionary feature of his limb difference?
The ulnarization surgery will correct his positioning of his wrist, which, for now, is bent forward. He lacks the ability – muscle control or necessary bones/tendons, I’m not sure – to pull his hand upwards. I’m told that this step is necessary to begin arm lengthening (because, imagine if your hand/wrist was permanently bent down, unable to lift).
There is definite logic to lengthening his arms: currently he requires full assistance in the bathroom, hygiene and dressing. Later in life we have to think about him cooking over a stove, reaching into an oven, everyday life things like grocery shopping, driving, etc. But, we don’t know the future. All I know now is, he can feed himself great. He can write easily. Are we sure we’re doing the right thing?!?
When we started pursuing correcting his legs, we ran into a similar conundrum. Many specialists were leary of correcting Drew’s legs because he occasionally used his feet to help with his hands. Sometimes he’d use his feet to transfer an object from one hand to the other and doctors were reluctant to eliminate that possibility. That’s why we had to visit so many specialists before finding one 1000+ miles away to correct his legs.
The way we figured it, he couldn’t stand or walk at all. He was facing a lifelong dependence on a wheelchair. He was basically starting out at “level 0”. Really couldn’t be less disabled. So, if we did the leg surgery and he ended up not being able to walk after all, then, “eh…that sucks, but at least he isn’t worse off like he had been able to walk and now he can’t.” He didn’t do enough with his feet as hands for us to be concerned like the doctors. We were with him everyday and while, yes, he did occasionally use his feet, it wasn’t nearly as common as the doctors before Dr. Paley thought.
But, if we do this ulnarization, he does stand to lose critical functions if it doesn’t work in his favor: eating with a utensil, eating finger foods, brushing his teeth, handwriting, typing on a keyboard, etc. What if we think we’re doing the right thing, but we’re not?
So, one of the first things I did upon having this upsetting realization is message a friend, a mom of a boy with TAR who has had the same surgery to ask some important questions. “Would you say he is more functional before or after ulnarization?” “Could he use a fork before and can he now?” “Does he seem to struggle not having his hand facing his mouth like he did before?” “Does he have the ability to lift his wrist up and down or is it locked in its position?” And, by all accounts, this boy is much better off after ulnarization. He has much more function and she even said it was one of the most helpful surgeries he’s undergone. *Massive sigh of relief*
I also sent an email to the clinic in hopes that occupational therapists who routinely work with patients post-ulnarization can provide insight and reassurance.
Sometimes, it is so difficult. It seemed so easy to decide to correct his legs. I mean, we knew it was going to be painful and stressful, but the end game was clear to us. We were steadfast in our commitment and ambition to pursue this life-changing surgery. But, it’s harder now that we know what we stand to lose….what HE stands to lose. It’s a tough position to be in: walking a thin line between independence and screwing everything up. We all want what’s best for our kids and, unfortunately, it’s more delicate and there’s no way to predict the future.
I’m trying to recall my frame of mind of this time six years ago as we were also about 10 weeks away from Drew’s very first leg correction surgery. Did we ever second-guess ourselves then? I’m pretty sure I did numerous times as we had to make painful adjustments to Drew’s fixators as he cried in pain or struggled during physical therapy. And, now Drew is an active player on a soccer team, a star in a dance performance, runs, hops, skips, jumps, dances and mobile thanks to Dr. Paley. So, it worked out and having second thought is normal. Having second thoughts is normal. Having second thoughts is normal…