Tuesday, February 12, 2013

One step forward, two steps...in casts

There's been progress. There's been a setback. And that's just the way it goes.

Max has been fascinated with words lately. In fact, he makes us tape little notes onto the kitchen cabinets with his food requests on them because 1) He likes to read them and 2) He is obsessed with mac and cheese and 3) He is obsessed with mac and cheese. The notes say things like "Make Max mac 'n cheese pie!" and "Max likes macaroni and cheese with ketchup." Max stands there and reads them to me, and I love it because he's making real progress with reading and because he is trying so extra-hard lately to articulate words.

And then, WHAM.

Last week, I took Max to visit his physiatrist. His school physical therapist had noted that his left foot was tight, and it looked like it was turning inward again. The pediatrician had mentioned that both heel chords were tight. Me, I've noticed that lately Max has been tripping a little more than usual. He's always been a bit of a tripper, but he's been taking some real spills and miraculously hasn't hurt himself. I kept hoping his feet would right themselves, wishful thinking and I knew it.

Max had been through serial casting in the summer of 2011 for his right foot, and it worked to straighten it out. (Max's right leg and arm have the most muscle issues because the brain damage from the stroke was worse on his left side—the opposite side of your body is weakened.) Ever since that cast came off, Max has been wearing a night cast (custom-made, in purple) and Dave and I have done our best to stretch both feet.

It turns out that both feet need serial casting. I knew it had to be, but my heart sunk.

Max's walking is the miracle of my life. Anytime anything's up with it, I get unhinged. Logically, I know that he'll keep on walking, and that the serial casting will only help. But this is not a logical response. This is from-the-gut distress that takes me right back to that conference room in the NICU where the world-famous neurologist told us that Max might never walk.

Ultimately, the long-term solution will be cord- or tendon-lengthening surgery; just typing those words makes me squirm. Meanwhile, we'll start six weeks' worth of serial casting at the end of February. Every Friday, Dave or I will take the afternoon off from work and get Max to the physiatrist after school. Every week, the old cast will come off and a new, differently-angled one will go on to keep improving range of motion and straightening his feet out.

The casting itself doesn't hurt, and the staffers at the hospital are great. I'm not quite yet clear on how Max is going to deal with getting around with a cast on each foot; it's actually good for him to walk as much as possible, because it stretches his feet. But I'm figuring Max will deal in his usual cheerful, indefatigable way.

Last time he had a cast on, he was in his spaghetti phase and I had to write "Max eats spaghetti sauce!" on his cast. I'm betting this time he'll want me to inscribe "Max loves mac 'n cheese and ketchup!" or "Max loves Cars 2!"

I've got the purple Sharpie all ready. My spirits? Well, they'll get there.


  1. Ellen, I'm sorry this is throwing you. You said it yourself, this will only help his walking and keep him doing so. You're doing the best thing for Max so he can continue to work hard and achieve these wonderful things.

    I do understand the feeling. We have a consultation with a GI this week to get our daughter started with a g-tube. While I know it's the best thing for her and she'll finally thrive with it, this is still one of the hardest things to deal with for me. It makes her brain damage so much more real than it already is.

    My thoughts will be with you each Friday.

  2. Good Luck w. your cast Max & Good Luck w/ your spirit's Max's mom!! I'm sure you both will get the strength to come through just fine. Love reading your blog & seeing Max's smiling face! xo God Bless

  3. Max is a trooper he'll get through the casting no problem if we're going to look on the bright side we can be thankful that he can walk.

  4. This is awesome! You and Dave will get a Friday off to love bomb Max! You could do the hospital thing and then head out to do something fun together! I'm kinda jealous (and Sabrina will be, too). Max will love the extra time with you two!!

    As for the other part that will interrupt your love bomb Fridays, I hear you. I am the Queen of denial about the most obvious things so I can completely relate. I know you know it will likely make him walk even better...but it still sucks. A lot of things will always suck. But the way you focus on the things that don't suck? That's what makes you the best Mom for Max. And an inspiration to a lot of stuck parents of special needs kids. Xoxo

  5. Once the serial casting has done its thing, you might want to talk to the PT and the physiatrist about the dorsi-ramp. http://www.c-prodirect.co.uk/dorsi-ramp/ A few of the top club foot doctors in the US are now using it with their patients with particularly tight achilles tendons, and I see on the manufatcturer's website they're recommending it for CP as well. (Serial casting is used for club foot, as well, which is what made me think of it!)

    I think Max is at the top end of the age range, so a slant board or other homemade solution may do it. The idea is that the child stands in it for a period each day, while doing another task, and the child's weight does the work of the stretching.

  6. Hugs to you! My heart breaks everytime there's a setback with my daughter. I can relate to your lagging spirits...hang in there!

  7. If it's any consolation, I'm a kid with CP who has been through serial casting multiple times, with casts on both feet each time, and I was able to get around just fine. The casts actually helped me walk better, and if Max ever does need tendon-lengthening surgery, know that it's not nearly as bad as it sounds- I was able to walk so much better afterwards. Hang in there!

    1. Wonderful Kid With CP, thank you so much for sharing that with me. It was very reassuring to hear that.

  8. I'd be all weepy too, but it seems that Max is crazy resilient & you all have a great sense of humor, so this too shall pass & there will be some interesting stories to remember from it.

  9. Hi Ellen. Just wondering if you've heard of a device called Walk-Aide. Used for kids and adults with foot drop, it uses electric stim to promote more natural movement. I've been using them for 2 weeks, so Im still learning, but I like what i see. Not yet covered by ins yet though of course. Sigh.

  10. "Ultimately, the long-term solution will be cord- or tendon-lengthening surgery..." I know you already know this, but I will be a noodge and say it anyway--start doing the research now. Start looking into the doctor you want, the hospital you want (if your insurance lets you make those kinds of choices) and the timing you want. The more you research and read, the less awful it will be when the time comes. Hang in there!!!

  11. Hello Ellen - our little guy went through castings (and botox) for a couple of years. That helped for a while, and then he had tendon-lengthening surgery. That surgery really improved his mobility. He's 8 years old now, still wears braces, but is so much more mobile. Also, the casts never slowed him down for more than the 1st day. He would crawl for 1 day with them, get his bearings, and then be back to walking at about the same ability he could back then. Of course, he was under 5 then. He didn't let it stop him from climbing on the playground equipment he was accustomed to playing on, though he would motion for additional handholds from us. It freaked out the other parents more than it did us. ;-)


Thanks for sharing!

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