MARCH OF DIMES | MARCH FOR BABIES | NACERSANO

Mobility A.D.s

I am attaching a few things that have really, really helped Katie in our attempt to get her to bear weight and eventually walk. 1) The Pony Walker- this was the first a.d. that we were able to get. It has really helped. Katie doesn't like it much, but it definately has been beneficial! 2) The Stander- Helped get Katie used to be in the standing position and was able to achieve the goal of her being comfortable with wieght on her legs. 3) A Rody Horse- this really helps strengthen leg muscles and balance issues. 4) Katie's AFO's- I do just love these things, aside from fighting her to get them on! They have really readjusted her feet positioning, while also allowing Katie to feel comfortable bearing weight. 5) I also wanted to mention that Katie has Hip Helpers, as well- very inexpensive and they help place the hips in the correct position that will lead to more effective crawling. Katie wears them all the time under her clothing. Please let me know if you guys have any other suggestions for getting my baby girl to start running!!! :ooh:
Katelyn'smom

22 Replies

  • Page's7
    First of all, thank you Kelly for all your bike research! As you saw on my blog, I think (hopefully) we got if figured out. :smile: :smile: :smile:

    Luke has been using (or is supposed to) knee immobilizers for nighttime extention. He has a hard time with getting comfortable and falling asleep with them on... Anyway, I never heard of using them for standing help! Great idea! I'm glad it seems to be working well for her! After Luke had surgery and while his right leg was still partially paralyzed, we used a "stander" which looked more like a torture device than a theraputic one! I could see where knee immobilizers would have been a really helpful alternative, since he HATED the stander.... You go Katie!!!!

    Hugs! :grin:
  • Katelyn'smom
    knee immobilizers
    So... we have something new over here. They are knee immobilizers. They do not allow Katie to 'frog leg' in attempt to get back into a sitting position. They keep her knees locked in place and they help in weight bearing. They are pretty hard to put on and once you get them on, Katie has to be upright leaning against something. At first, I was a bit skeptical about them. They seemed very uncomfortable.... but, I think it Katie is getting the hang of being upright and liking it. She has been pulling up to stand much more. Hopefully in time, she'll be able to stand alone....

    She is so funny. She loves to look in the mirror when she has them on. She puts her hands on her hips like she's big stuff! :wink:
  • Katelyn'smom
    Hey Page... so, here are some websites that I found that include different types of bikes... I still haven't really figured out a way to get them paid in full or partially even, given that the bike is not per say a 'primary mode of transportation' like a wheelchair and such. I asked our PT and OT and they couldn't think of anyway to get them covered.... But hey, if the 'Bike Lady' and the 'Big Daddies' can somehow join forces and make it happen for Luke... that's awesome... although, I must admit I am kinda chuckling at the names! :)


    http://www.especialneeds.com/pediatrics-bikes-bicycles.html

    http://www.especialneeds.com/pediatrics-tricycles-bicycles-training-wheels.html

    http://www.adaptivemall.com/specneedtric.html

    http://www.bike-on.com

    http://www.billdarbydesign.com

    http://www.frankmobility.com

    http://www.freedomconcepts.com

    http://www.haverich.com
  • Page's7
    Well. I really am getting no where with the county social workers, so Luke has an appointment at the CP clinic next month and I'll talk to the clinic social worker and see if she can offer more help. I spoke to Luke's PT again yesterday, and she's pretty confident that a group called "Big Daddies" or something like that will be willing to help pay for some modifications on Luke's current bike, or get a whole new one all together... Whichever the "Bike Lady" (as they call her) decides would be most beneficial. After he's evaluated by the "Bike Lady" she writes an estimate, the PT writes a letter to the organization, and they usually respond with an offer. She said the last child that got a new bike was given $1000 and the family was only responsible then for paying the remaining $350. That's a good deal! Not that I can really afford even $350 right now, but I would find a way!!!! It would be such a self-esteem builder for him! :smile:

    P.S. Thanks Kelly!
  • Katelyn'smom
    Let me see what I can find, Page.... Katie does not have an adaptive bike, but I can totally see the benefit of one. I think you are doing the right thing involving the SW... if I have learned anything from this process it's that the money is out there for stuff like this, you just have to know where it is... and who to 'befriend'. I'll get back with you if I can dig anything up!

    Love, Kelly
  • Jackie G
    Aww. Page... My heart breaks just reading your post. :frown:

    I hope that someone has some advice for you and can give you more options on how to get Luke zipping away on his own little bike.
  • Page's7
    Love that stroller! :grin:

    Our most recent quest is for a bike... or trike... or what-ever it takes... We've been pretty resourceful when it comes to A.D.s, but I was reduced to tears the other day when I wanted to take my kiddos for a bike ride and I couldn't get Luke's feet to stay on his mostly-homemade bike and couldn't go anywhere. To make it worse, Luke was feeling bad because he wished he had better balance so he could have a "normal" bike.... I felt SO guilty. SO, I talked to Luke's PT about finding a bike for him, and she's going to have a consultant from a company that manufactures adaptive bikes come down and see what he needs. The only problem of course is the cost. These things cost a small fortune and insurance won't even think about covering it. I'm in the process of getting a social worker to help me figure out what other resources there are to help pay for it, and an organization here in town just donated nearly all of the money for another little girl with cp to get one... So I know it's out there!

    My question: Do any of your little ones have an adaptive bike and did you get any help paying for it?

    Thanks,
    Page
  • Angel Love
    Too cool! Sammy V is rocking out that ride!!
  • Katelyn'smom
    Hey Missy! Thanks for sharing. Wow.... that stroller pretty much...well, rocks! I like the fact that it has the sun catcher/ top to it. That's one thing that I wish that Katie's had. I am loving me the cooling vest as well. I have never seen one of those, although I can totally understand the logic. I could definately use one on some of these hot, humid days! Sammy looks great. I hope you and the fam are doing well!

    Love, Kelly
  • Sammy V's mom
    I just wanted to share a picture of Samuel with two of my most favorite medical devices. First is his medical stroller. It's a Kimba and has been so awesome. It's super easy to push and doesn't look too much like a wheelchair. The shade on top makes it look more like a stroller. He'll fit in it until he's about 6 years old. It hold his oxygen. It has tilt and recline. It has adjustable seat supports. And, it folds flat like a stroller. It is a bit heavy, but i can run behind it and steer it with one finger! It also has a decent basket on the bottom.

    The second thing is the cooling vest he's wearing. It's from Silver Eagle Outfitters and does such an awesome job in helping him stay cool on hot days. You just charge it with a bit of water and then wear it. It doesn't make your clothes wet and it lasts for a few hours before it has to be recharged.

    Just wanted to share!

    Missy
  • katestclair
    Kelly

    That is amazing...I hope she can get used to it and that it helps her!!

    Kate
  • esgf
    THat is an awesome set of whells. I hope it works out great.

    Ellen
  • Katelyn'smom
    The walker
    Here is our latest set of new wheels :wink: ! Katie got her Pacer walker last week. I can't say that she is 'in love' with it yet, but hopefully she'll get there. Currently, we are still using the seat because she won't stand up straight quite yet. I'm running out of space in the house to put all of these wheels!!!

    #1 is a pic from the front, #2 is from the back, and #3 is from the side

    I'll try to post one of Katie in the walker later!

    Love, Kelly
  • spgirlie
    Lindsay W
    Thanks so much ..
    :smile:
  • Lindsay W
    Hi Allegra,

    The March of Dimes does not maintain a list of families coping with various disorders, but the National Organization for Rare Disorders (NORD) does. You might be able to link up with a family through NORD: http://www.rarediseases.org/.

    I found a site on pediatric prosthetics that migt be able to provide you with some support and information: http://kidscanplay2.rtrk.com/?scid=830906&kw=4138410

    I hope this is helpful to you and wish you and your son all the best,

    Lindsay W
    Pregnancy & Newborn Health Education Center
Related
Related Tags