Saturday, May 11

Let's talk about baby leg braces; Show me the Money

I realize this looks like a weird, stretched-out
picture but he's just real tall, ok?
This past August, we were told by Branko's pediatric orthopedic surgeon that he would require surgery on his legs and ankles in order to eventually be able to walk. Until then, he felt that AFO's (ankle-foot orthotics) would be necessary.

Our son, 14 months old at the time, had never been able to bear weight. He couldn't even play in a jolly jumper at that point. His legs were weak because he couldn't stand; he couldn't stand because of the deformities in his ankles.

We were excited at the prospect of actually seeing him stand, and how his perception of the world might change. A small part of me hoped/thought he might put them on and immediately start breakdancing, or at least, start helping out around the house.

I fantasized about looking back on the experience later on: "oh, THOSE leg braces.... he wore them for like, a month, and then starting walking perfectly! Money well spent!" That's not quite what happened. I really, really wish I like the things. They are bulky, velcro-y, and they hurt when he kicks. Originally, they kept falling off. These two $3300 pieces of plastic (we paid $750; thank you OHIP, I guess) took a short trip along the middle of Bathurst street one day after Branko kicked them off while in the stroller. Off the top of my head, I don't own anything else worth that much, except my house, and gladly, I don't have to worry about it getting run over by a car.

Other than falling off, the only other problems arose from attempting to mitigate the reactions of other people. The first time I took him out, he had shorts on, so the braces were fully visible. I could never have predicted that I would be in a situation where I was comforting strangers. After noticing a few sad gazes, I quickly realized I was quite good at providing comments like, "Don't worry, he's not in pain" or "his legs aren't broken" (even though they are) or "he likes them!!!!" Please, all you concerned strangers out there, let me comfort YOU with regards to my son's medical situation. Kind. of. messed. up. My personal favourite: ahem, "Does he have spina bifida?" WHOA, cashier at my local LCBO, slow down there. How did we get to be such good friends?

Aside from their poor mechanics, Branko was a pro at standing. I think he pretty much stood right away, though he was very shaky. Eventually, he was cruising up a storm. He was able to finally stand and play with things on the couch! A whole new world opened up: puzzles, drawings, Mr. Potato Head. He can do all these things sitting down, but it's much easier without being all hunched over on the ground.

The purpose of the braces was for support and protection leading up to his surgery. His original date was March 12, then it was rescheduled to May 7, which was cancelled because of his pneumonia. He is now scheduled for June 25th. The problem is, his braces don't fit him anymore, and we are waiting to see the orthotist next week. He looks extremely uncomfortable when they are on. We have also noticed mild bruising and swelling on one leg. So now, we are operating with a "no standing policy" in our house. We are encouraging him to crawl, shuffle on his butt, or just sit and play. It's a bit difficult, because he CAN stand up on his own.  Trying to prevent this may be tricky.

Right now, I am trying to navigate my way through OHIP's Assistive Devices Program, trying to see if we are eligible for a replacement pair, since it was less than a year ago that we got them. I have also filled out a vague application form for my work's insurance program. (It asks nothing about his long-term condition... weird) I have also been perusing March of Dimes and Easter Seals Society, looking for some cold, hard, $$$$ to help pay for these things. The application forms are ridiculous. There's a certain order to things: first, you apply to OHIP's program; then, to your private health insurance company, THEN, if you qualify, you may apply to one of these organization's very generous assistive device grant programs, only after successfully doing a one-armed handstand while eating a sandwich. I am sure everything, or at least something, will work out in the end. After hours of a filling-in-forms-marathon, I need to go tend to my party animal:







2 comments:

  1. Hi! I found you through The Mighty, and I know you have a new site now, but I want the full story on Branko, so I've been reading (from newest to oldest, but still).

    I want to say, I am nothing like your son--although I'm a sarcastic, bilingual 27 year old with a new expensive piece of plastic. I wear an AFO on my right leg. Holy hell, it's heavy. But, I walk better. Except, since I've been screwed up for the last 11+ years, my back and hips now keep popping out of place. Because I've been using the wrong muscles from trying to compensate for the last, you know, 11 years.

    Annnnyway, I like to think of myself as 3/4 plastic. Splints on each arm, and a fancy pants Afo that actually fits (no wonder I walked wrong. The original one was more like a fashion accessory). The cascade of gym lockers that landed on top of me resulted in a condition known as RSD or CRPS (it's obviously not as rare as Branko, but the doctors can't agree on the name). But basically, the most severely affected area is my right upper extremity, and if I get touched, I may see you in the ER!

    To sum up, WHAT IS IT WITH PPL NEEDING COMFORT FROM US, the plastic people (or their parents)?!?!?! Dude, I'm not contagious. I am "so sorry" my crunchy body and braces seemed to have frightened your dear daughter. I invited her to touch the plastic--see, it's okay--and the mother swooped up the kid, no no no, so sorry. Psh, screw you.

    Anyway, best wishes to you guys. Can't wait to read more!

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    Replies
    1. Um, best comment ever! I wrote this so long ago that I'm cringing now... I would never ever complain about any medical equipment/device nowadays, but I'm leaving this up as a reminder of the good old days of us getting used to all his new stuff. (Although the price tags still confuses me. $3000. I really need to learn to make them myself).

      I still get the "oh my word it must be contagious" face when people notice the braces, and it still bugs me, and it's always going to bug me. I don't need strangers asking what he has, or what happened, or "what are those?" and then pointing to something on his body. (I do think there's a right way to broach the subject, but so far very few people in the world have this gift).

      I hope your new AFO keeps you pain-free and mobile, and that no more kids get swooped away from the (scary) plastic!

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