Tuesday, February 12, 2013

One step forward, two steps...in casts



And then, WHAM.










  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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