Tuesday, May 18, 2010

Therapy is kicking my ass

So yesterday I had my daughter's hippotherapy evaluation, for which I paid $175 so four ladies could fit Hannah with the smallest helmet they have (ump-de-ump times, since her head is so small she needed a lot of pads stuffed in) then pull her screaming from my arms and walk her around the ring on Tulip the pony while Hannah screamed bloody murder at the indignity of it all. All is not lost, however. After the session, she did smile when I asked her about Tulip, and she petted her nose and waved bye-bye. When I asked her about Tulip at home, she gave me a super large Hannah grin, possibly planning her next tantrum.

I think I can do a few things to improve our next session, which is a few weeks away, such as work with her on wearing a helmet, take her to places that do regular pony rides for $10, and let her feed and pet a horse through a fence and so on. But, um, holy shit. Everyone who is into it thinks it is the most effective technique ever developed, and few places will work with a population as young as Hannah, and only the National Ability Center is certified for hippotherapy in my state, so their prices are higher. But it is odd to pay that much to make your baby scream. I can do that for free, you know. I am highly qualified if not actually certified. The benefits my PT (the one I love, who got Hannah to crawl against the odds) wants her on a horse for development of the muscles of her trunk, and the OTs want her on a horse to benefit her use of her hand and along the way get self esteem, speech development, and a sense of accomplishment. But $3000 plus for this year, and a half hour drive each way?? I will do it, I am sure, as this time of zero to three will never be available to us again, with extra neurons just floating about waiting to get used, and a plastic little brain just itching to be rewired. But OW. Someone please tell me how full of the awesome hippotherapy is. Please.

Now, AFOs - those of you not in the special needs community - this means ankle foot orthosis. Ours is a just above the ankle sized boot, and it makes her foot bigger enough that she cannot wear regular shoes. Shriners gave us some Skecher type shoes that are like Frankenbaby shoes. I cannot bend the soles with my hands, I don't know how her skinny wee legs could possibly make her shoes flex and I can't believe anyone - hemiplegic or not - would walk better with feet that don't bend anywhere. I bought some expensive baby sandals from the expensive baby store, and they can adjust enough to cover the boot and give her a soft flexy sole but is there another option? What about in cold weather? Help? Ideas?


  1. I wish I could help. But I'll cheer from the virtual sidelines!

  2. About hippo- I understand. It took Oia a little time to warm up to the idea of being on a large brown thing with a helmet on her head. She too needs pads in the front and back of the helmet. And we too pay out of pocket, the cost amounts to a little over a dollar for one minute! But why an eval?? Just put her on the pony and go...that eval was a little money hungry in my opinion. Stick with it for awhile...she will come around.

    Shoes-AFO's. Find a Stride Rite store nearest to you. We have always used these shoes and they are GREAT. (I didn't say cheap but great) Here's the deal...we found that a shoe with a lower cut on the toe and one with velcro straps work best. If a shoe has straps that do not wrap over the AFO once on, then take the shoes to a shoe repair or some old lady who's dying to sew and have the straps lengthen. We have done this with all of Oia's shoes. If a shoe has a tongue, feel free to cut it out. We did this with a pair of SR tennis shoes and it worked beautifully. Also, take out the insoles that come inside the shoes. It's not much, but it allows alitte more room for the foot/AFO to sit down in a litte further into the shoe itself.

    What size of shoe is Hannah? I have a pair that Oia has outgrown that she rearly wore. They have lengthened straps and ready for AFO's. I may even have another pair, depending on her size. I'd love to pass them on to someone who can use them...PLEASE email me her size (with AFO's) and your mailing address!

  3. Evan has a single AFO. We used to be able to squeak by shoe wise if we took out the insert in the AFO shoe and got shoes that were a half size bigger than his normal size. We would use the removed insert and put it in the non AFO shoe so that his foot would not move around as much. Then he got a hinged AFO which is a ton bulkier than the non hinged. Then we just caved and got two different sized shoes.

  4. Aww, poor Hannah! I'm glad to hear that she did like the pony, though. Maybe she'll be more excited about her therapy next time.
    As for the AFO issue, I understand your pain! I remember going to eight - count 'em, EIGHT different stores when Monkey got his first AFO at about Hannah's age. Another mom of a single AFOer suggested that I try "skateboard" - type shoes. Brands such as Etnies, Vans, etc. are wider than regular shoes and can accommodate a brace better. Etnies has a brand of toddler sneakers that have a velcro tongue that opens completely up, making it so much easier to put on a braced foot. I'm so sad that they don't make sizes in that style to fit Monkey's big foot anymore! =( Anyway, here it is: http://www.zappos.com/etnies-kids-toddler-fader-gwm-infant-toddler-white-pink-pink
    Good luck, and I hope Hannah doesn't have to go barefoot! =)

  5. That's just bad - having to pay that much money for something so crucial.
    And sorry I don't have any advice. Just holy crap how much do you have to deal with. x

  6. Captain Chaos just graduated out of AFO’s. We addressed the shoe situation by purchasing Stride Rite shoes a size or two larger than her actual shoe size to accommodate the AFO. We purchased these shoes used in a thrift store when we could. We looked for and took advantage of sales when we could, sometimes buying the next two or three sizes at one time in order to take advantage of a good sale.

    I do not know anything about Hippo therapy. I cannot envision my daughter riding on a hippopotamus. I can see her riding in a hippopotamus, as a baby hippo could swallow her in one gulp. All joking aside, when we needed to strengthen her trunk, increases her side-to-side motion, and encourage her to loosen her rather stiff movement (this was back when she was 15-18 months old), all in order to help her learn to move her tongue side-to-side to help develop the ability to eat, we worked with her on an exercise ball. We sat her on the ball and gently rocked her side-to-side, forward and backwards, forcing her to move in order to remain upright. We played games and conducted some of her other therapy activities on the ball. We played on the ball as often as possible during non-therapy times. It seemed like the silliest thing in the world at the time and I admit that I thought the therapist who recommended this treatment was insane, but it worked. We started the exercise ball therapy in August and by Thanksgiving she was eating.
    I don’t know if anything I’ve written here will help you, but I encourage you to keep trying because you will find something that works, and you will feel on top of the world when you see your daughter’s progress!

  7. Came here through Love That Max. Didn't gave time to read the comments above so I'm sorry if I'm about to repeat all the wisdom previously shared. My little bird has worn SMOs (just above the ankle and all the way to tippie toes) since she was 18 mos old, which was before she could walk. I tried the stride rite shoes at first but they were so clunky. The best I've found is Adidas. They're definitely wide enough. Don't forget to take the insoles out. You don't need 'em since the braces provide enough padding or shock protection. Since we are in two braces, we need shoes the same size but you might need one a size larger. I think nordstrom will sell you two shoes of different sizes. Expensive, but shoes are important ;)

    good luck!!

  8. You know, I can't even begin to relate to how you get through each day, dealing with what you must and advocating for your kids at every turn. My hat is off to you. I guess we do what we must when called upon but you have a big heaping plate of stuff.

    P.S. My Friday Haiku is up!

  9. I think Hippotherapy would have been great for G. But I'm so deathly allergic to horses, there is now way I could ever bring him... and the worry that he'd be just as allergic as I am.

    LOVE that the Pony's name is Tulip!!!

  10. I would totally name a pony "Stinky." Because they are.