The Laliball

white-ball

Laelia’s Christmas Present from her Parents!

She’s kicking it to Mama.

We went to a wonderful physical therapy appointment last Monday night. Well a wonderful OT appointment too, but PT was exciting.   Lali is always better about therapy with the therapist than she is at home with the frustrated Mama! :)   But her new ball is super fun for therapy; she loves bouncing on it and hanging off it.   I’m always impressed with how many things a PT can figure out to do with a giant ball.   It also looks like Lali is getting a bit stronger.   And we don’t even realize that there’s any difference (which is depressing) until we meet with our PT and she notices (which is exciting)! :)   It’s encouraged me to be better about Lali’s weight bearing exercises and hip stretches for sure.

The numbers:

So Lali is 30 degrees from zero (straight) on her right knee and hip and 20 degrees from zero on her left knee and hip.   It’s better than a lot of kids with her condition, but having those contractures are keeping her from being able to use a stander, among other things.   However, we are going to double our leg stretching efforts and see if we can’t get that closer to 15 degrees on both sides.   Or even if we can just get her closer and put a platform shoe on her right foot and…   I dunno.   Of course we have not seen much gain in range of motion in her knees for a long time so maybe she’s hit her limit and needs more surgery.   I’ve researched the knee surgery it requires (a zig-zag Z scar on the back of both knees) and am hoping we can avoid it.   Hip surgery is also something we’re working on avoiding, but it’s looking more and more necessary.   Pray we can stretch out her hips in the next four months!

Even though she’s not quite straight enough, her PT is going to call some vendors and see about different modified standers for her.   (A stander is just a big contraption that straps you into a standing position to put weight through your legs. See picture below.)   So it would be really exciting if she’s able to use one!   The last time she tried to use one, her legs were too bent and her hips were too abducted so it didn’t work at all. Gave us a cool picture though. :)

stander

Baby Cool.

Our PT is also going to start looking into electronic wheelchairs for Lali. She said she’s thinking Lali will need one by the time she’s three years old. Insurance companies are generally not crazy about replacing them more than five years apart so we may have to get something big that she grows into.   So by the time she starts kindergarten she’ll hopefully be mobile!   It’s fun to consider!

Speaking of kindergarten and the future in general, I’ve been kinda worried about it.   Because she has no mental disabilities (Yay!), Lali will be kicked out of all programs, like her Early Head Start school, at age three (Boo!).   Then we’ll have to find a program that will take her AND change diapers.   (None exist.)   Then we have to hope to figure something out (in the way of taking care of her potty needs) before kindergarten.   I’ll check with the American Disability Act people and see what exactly is covered by the concept of equal access.   I’m sure it will work out, but I worry.   I let worry get the best of me yesterday, and I’m determined not to repeat that today.   Back to focusing on her great PT experience Monday! Yay!

4 Responses to “The Laliball”

  1. Tam says:

    why cant she toilet train? My sophie was 3 when she came home and is 4 now, been home about 3 months and NOT ONE ACCIDENT! she knows when she has to go and lets me know and I take her. she can hold herself up on the toilet. the picture of laelia behind the ball looks a lot like how sophie sits and scoots. and the bottom one with the legs splayed is JUST like sophies. We see the lowers doc on the 15. but unless there is a problem with her internal organs there is no reason she cant toilet learn. Sophie goes to preschool and they have no problem taking her to the bathroom and helping her.

  2. Robin Clark says:

    As a Regional Center Service Coordinator, I’ve either had or heard about kids who do need restroom assistance. Even though Lali doesn’t have cognitve disabilities (than God~) she would most likely have an IEP due to physical disabilities. There are kids on Regional Center caseloads who can CP or Epilepsy and no cognitive problems. I have a 15 year old guy on my caseload with very involved CP. He is in high school. When he goes to the restroom he has assistance.

    Of course, Tam knows more than I do about kids with arthrogryposis!

    Blessings and wow, Lali is really trucking along!!

  3. Robin Clark says:

    I meant thank God….

  4. Stacey Benson says:

    Hey it’s me Christopher’s mommy!! Debbie told me about your blog and I have had so much fun reading about Laelia. She cracks me up!! Next time we get together at the family functions lets talk about preschool…I think she may qualify then all you would have to do is move to my school district and Laelia can be in my class!!

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