Friday, October 19, 2007

Working on Wheels

This past Monday Eden had her first evaluation for a power chair, as well as a boatload of other equipment. The appointment took 2 1/2 hours, and she was amazingly good considering how long that is for a 3-year-old!

Edie got to try out a demo chair that they had available, and you should have seen her little eyes light up when she figured out that she had the power to make it GO! At first, she could only make it go backwards, but within just a few minutes she figured out how to move forward. She went down the hallway, and out the front door with a little help keeping it straight. When the door opened and she went outside she exclaimed "WOW!" Very cute. I am betting that once she actually gets her own chair, it will be merely a matter of hours before she is cruising in her chair.

The chair we tried was the Quickie® Z-500™. It is just one of the options we are considering. Others include the Power Tiger and TDX Spree by Invacare, and the Koala and K300 by Permobil. We have another appointment a week from Monday to try the Koala, although with our insurance situation it might not be an option. We are actually leaning toward the K300, but because it is new we can't try that exact chair. There are pros and cons of each, but the K300 seems like it might be a good option for Eden, and it comes in PINK, which is not a MUST, but is definitely a BONUS!

We've also started the process of ordering Eden her own Pony Gait Trainer, a bath seat, an adaptive potty, and we're looking at a couple of seating options. Everything we have been using up until now is borrowed from either the private physical therapist, or from the school district. It's scary ordering equipment. It's SOOO expensive, and once you get something you are stuck with it, even if it doesn't work out. I am not sure, for example, if Eden could sit well on the Leckey potty I linked above. We have a little yellow potty seat borrowed from the PT that she sits GREAT in, but the company doesn't make that one anymore, and the equipment supplier we are working with doesn't work with that company anyway!

I would pay for this potty chair myself if I could, because Eden has been using it as a chair in the sandbox, and on the floor. It is perfect in terms of letting her sit at the same level as Holland, with just the right amount of support. I've thought of having my mom make a cushion for the bottom, so you can't tell it's a potty, and she could even use it as a floor sitter at school to sit in circle time. So many of the other options that are available are quite exclusionary, and difficult to get her in and out of.

While the wheelchair is a great thing for Eden in terms of giving her more mobility and independence, I hope that she doesn't start refusing to use her Pony. I also don't want her to end up sitting in the chair ALL DAY at school because it puts her so far away from the other kids. My goal is to keep her at the same level, doing as many of the same things as the other kids as we can. This is much more difficult than I anticipated. Even in her little speech group at school we are having a hard time coming up with good seating options. The little chairs that they have available for her to sit right up at the table with the other kids are turning out to be too hard for Eden to maintain, as well as not supportive enough for her to use her hands because she works too hard to try to stabilize herself. It's going to be a balancing act in more ways than one.

I have to give myself permission to let some things go. She is different. She's always going to be different. There are always going to be some things she just cannot do. And that's OKAY. A lot of things are worth fighting for, and I will fight when I need to.

But sometimes you just have to let it go.

23 comments:

cori said...

your girls are so beautiful!

Stacey said...

Go Eden!

That is seriously the most infectious smile. Do you even have pictures of her not smiling? :)

Sadie said...

I'm going to tell you something you already know:

Eden is gorgeous. She sparkles. She shines. She does not look as though she is going to take life laying down. She WILL find her niche, her passion. She will cultivate meaningful relationships. It won't be easy... but there is a strength of character and sense of joy about her little 3 year old self that looks up to the challenge.

Mel said...

We had our hearts set on the Permobil chair and now it looks like its not going to happen due to insurance issues. I wish you luck!

Dream Mom said...

Sounds like you have some good options.

That is a lot of equipment to order at once however that's what happens. All of a sudden you need everything!

We are typically limited by a $2,000 (yes, you read that correctly) DME limit. One advantage to twins might be double the DME limit (since each girl would have her own DME limit)? I know nothing is easy.

I don't have any experience with the power chair however one thing that I do for Dear Son when we order a new chair is to order a backpack or bag that attaches to the back of the chair. This backpack then matches the chair and can hold extra clothes, supplies for changing/feeding, AFOs or whatever. The bag has a zipper top and then a small bag on the outside that I store his notebook in (for notes I exchange with school). If I order it with the chair, it's usually covered but is not covered if I order it after the initial chair purchase.

It's amazing and fun to see more options than existed 15 years ago. I am glad for you.

Jenny said...

Rebekah's first power chair was one similar to the koala and they have stuck to similar chairs since because they think it's the best one out there...I think the Koala is best for Eden based on how well Bekah's chair works for her. It is so simple that I can operate all the features when caring for her. Just my input on which one you should choose! Bekah nad Eden's CP are VERY similar..

Brooklyn said...

Billie,
Could you tell me what piece of equipment she is using in the first picture? I need something to get my daughter Brooklyn up and standing securly. If you don't mind, can you leave a comment on her blog telling me what it is? www.brooklynbutler.blogspot.com
Thanks!
Kelly, Mom to Brooklyn (Rett Syndrome, age 2)

Anonymous said...

Who are you borrowing that potty seat from that you want but can't find?? Do they REALLY need it back?

Amy

Lisa said...

I wonder if you could try the Rifton corner floor sitter somewhere? It looks pretty good but doesn't have the arm rests that the potty chair does...
http://www.adaptivemall.com/ricoflsi.html

Good luck!

Laura Lynn said...

I haven't stopped to sign your guestbook in SO long, so figured I should stop for a moment to tell you how incredibly beautiful the girls are! I cannot believe how big they are getting; what a blessing. Please know I continue to keep your family in my prayers often.

For Prayer Support:
www.asherandjacobsfriends.com

My two little miracle nephews, Asher and ^Jacob^:
www.caringbridge.org/visit/asherandjacob

Anonymous said...

Billie-

Your girls are adorable! Eden is a fighter and she is a determined little girl! I am proud of you and your husband facing this head on. It's hard and I know what you mean that you "have to let some thingss go." The little yellow potty seat in the picture; I bought one on E-bay and it came in great condition. I just sterilized it good and cleaned it up and it works great!

Take care of those beauties!

Shari

Anonymous said...

Lovely pictures. I don't know anything about all the equipment, but it sounds like a blessing that so many devices are available to make life easier for Eden. I am sure you will find some good solutions.
If you don't know the book already, get a copy of "Zoom" by Robert Munsch, a fun book about a girl who goes shopping to pick out a new wheelchair, and she test-drives the hot 92-speed black silver and red dirt-bike wheelchair. It goes so fast she gets a speeding ticket from the cops. It's hilarious. Sounds like Eden will have that kind of go-get-em attitude with her new wheels!
best wishes,
tripleblessings

Brooklyn said...

Thanks for the info on the Rifton Stander!

BusyLizzyMom said...

Billie,
That is a lot of information for you to take in. It must be so exciting to be able find something that Eden will be totally independant in but at the same time saddening as you may have to alter some of your hopes. We can't wait to see Eden chasing Holland in her pink wheelchair. Look out Holland.

Anonymous said...

your girls are beautiful. Well done in raising such gorgeous girls.

Mia said...

I've stopped by before...My son is three and autistic. I went to a seminar for Oklahoma disability benefits and found out about this site, sort of like ebay for adaptive equipment. i know I saw a car seat, a pony walker and some bath/potty seats. Does your state have something like this? Oklahoma also does loans for equipment, too.
http://www.ok.gov/abletech/
It's under the Oklahoma Equipment Exchange link. If you see something you ike and need help getting it, let me know:)
mericaluv@yahoo.com

Mia said...

And they are the most adorable girls!!!

Mia said...

This is the pony walker link:

http://oec.okstate.edu/items_available_detail.php?item_id=233

It's a Snug Ride size 1 for $400.

Kathryn said...

Hi Billie,
GREAT post. Thank you so much for all the links.

For Eden have you considered the feeding seats that hook right on to the table. That would get Eden at the table with Everyone Else!

Ellie did really well in the Inglesia and here is a link to one that looks like it even has a little head support

http://www.amazon.com/Munchkin-Feeding-Friend-Portable-Chair/dp/B000SONXDO/ref=sr_1_7/102-6318702-9524115?ie=UTF8&s=baby-products&qid=1193234989&sr=1-7

If you go to Amazon and type in "feeding chair" you will see a ton that come up. They are good till about 35 pounds. I miss using them with Ellie. But you saved us with pointing out the first years reclining booster!

Anonymous said...

Hi! So nice to see the pics and read about all the cool equip.
I love you all very much.
This is my first time on the computer in a very long time. Connor & I enjoyed your blog so much. Lots & Lots of Love
You are a special woman & I am so happy that John & the girls have you. And I am really happy that Cody & Connor have you as an Aunt and a role model.
You go girl! Just had to tell you how we feel. All our love & cheers to the 4 of you.

twinsplus1 said...

Hi Billie...I have never posted before but I am a avid reader of your blog. You are fantastic as are your girls. I just wanted to tell you about the recall of the bumbo seat since you have one. Read about it here http://www.msnbc.msn.com/id/21472055/?GT1=10450

Kim said...

This is probably pointless as I know you have a lot more information about adaptive equipment than I do, but I just got a catalog in the mail from therapro (www.theraproducts.com) and the first few pages are full of stuff that I can easily see Eden in. Now let's hope they have something that might help J figure out how to move a little easier!

TBG said...

what is the name of the yellow potty chair. I know a google master who will find it for you.

Email me at

kate205@gmail.com

I will have her try and find it.