Decisions, Decisions

Well, the wheelchair man has come and gone and I’m flattened from the whole thing, but it’s done.

After reading the comments people left this morning, I was certain that I would not be happy with a stroller-type wheelchair. If we had to have special seating then I wanted the real deal–a wheelchair. I told the rep as much when he arrived and he agreed. His belief is that kids who will be good candidates for power chairs should start off in regular wheelchairs. That way, when they eventually move up to the power chair they’ll have a back-up chair for days when the power chair needs servicing.

Made sense to me.

Unlike some some other places, there are no showrooms of wheelchairs in the New Orleans area and I pretty much have to go with the dealer’s recommendation. He recommended the Quickie Zippie which come in two models: the GS and the TS. The TS has the option of tilting back to allow the person to rest. The GS can be moved by the child independently. I felt strongly that the room (the rep, the OT, and the PT) wanted me to choose the TS with tilt.

I wouldn’t agree to the TS, though. The TS cannot be self-propelled. This means that the chair would only be pushed by me and Charlie would have no chance for independent mobility. I have no idea whether or not he’ll be able to propel a wheelchair at some point. Right now I’m not sure if he has good enough use of both arms, but I hate the idea of making it impossible. And since this will most likely be his back-up wheelchair for as long as ten years, I just can’t feel good about that. When it comes time to purchase his power chair, we’ll address the issue of tilt again, but for now I’m more interested in independence. He probably won’t be spending long hours in the wheelchair at this age, so I’m less concerned about fatigue. This is a stepping stone to what we really want–some form of independent mobility.

So we went with the GS in yellow with charcoal cushions. Charlie will be embroidered in yellow on the seat. Those decisions took about five minutes, which surprised the dealer. He said that picking colors is usually the longest part of the process. I won’t get into how much it scares me that parents are more interested in colors than in the actual chair.

With the PT and OT there, there was also a lot of talk about standers, positioning chairs, and the fact that Charlie will be aging out of Early Steps in June, which is less than a year away. There will be many more decisions to make then. At that point I was pretty spent. I have some ideas regarding the stander and chair, and I’ll keep you posted. All the wonderful advice I received on my last equipment post was extremely helpful.

It’s hard to pick out a wheelchair for your child–I’m more emotional than I expected to be. Rationally, I know that this is a good thing, but my tear ducts don’t seem to get that. I also worry that this meeting is just a sign of things to come. A foreshadowing of many more meetings where my expectations for my child are so much greater than anyone else’s. I’m a little exhausted thinking about it.
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Comments

  1. Hey Katy, I think you guys will like that one. When we were selecting one, earlier in the year, we had a chance to use that one, when Faith had double casts. I did like it alot but you might check and see if they can add taller handles on it. I am not a tall person, 5'5", but I did find them uncomfortably short. Faith liked it too, other than that I would say it was a good chair. It folds up pretty compactly for a wheelchair. I did have a chance to have Faith's name embroydered on her chair but our med. equip guy recommended against it, and I quote "you don't want just any old person in public being able to know your child's name." Plus we were thinking about when she gets too big for it that we could donate it back to another child w/o a name on it. Just a thought. BTW, Faith's correct chair just came in today, we are going to pick it up, tomorrow. GOOD LUCK!

  2. PS Katy, sorry one more thing… Carl and I went through some of the same feelings and concerns. You might be surprised, Charlie might just take off! We wrestled for a very long time about it, to the point of being too late! If you order it now, you might be waiting a long time and Charlie will be doing more. They didn't think Faith would be able to push her chair but after the second time in it she figured it out all by herself! And she is so happy to be able to move when we are out in public instead of having to rely on us.

  3. Max has the Quickie Zippie TS. It is a good chair for Max, and they can really be adapted to each child's needs. It is quite heavy all put together, but folds down nicely.

    Max will likely never be a candidate for this, but I've always loved this chair for a little one.
    http://www.wizzybug.org.uk/ I don't know if they've started selling them over here, but I think it is absolutely adorable!

  4. I don't know anything about wheelchairs for kids, but I followed your logic and think you made a good choice. I'm exhausted for you… sounds like a tough day.

  5. Melio (MelissaInk) says:

    Congrats on picking out a chair! Good for you for going with your gut and not giving in to "the room."

    Man, I have trouble just picking a stroller … bought one my husband pressured me into and am now testing out my neighbor's.

  6. alexandra cunningham says:

    Josie is only six months old, so there's no way to know yet what we will be facing or what decisions we will have to make. But when and if they arise, I hope to handle them with even a fraction of the grace, strength, humor and integrity you show when kicking ass for Charlie. Who incidentally is cute for days.
    And thanks for the jacaranda picture. It's exactly what I meant.

  7. MeghatronsMom says:

    I think we got the zippie 2. I can't quite remember, I'd have to look it up. Good for you on getting what YOU think is best. Sometimes, they dont always know what will work best for your family. Besides, you could ask every one of them & they would have each had an opinion. Good luck & getting the rest of your equipment. We too just had to go by pics when looking. I guess it is a good thing that their arent just show rooms around cause that would mean a lot more children need chairs.

  8. Katy,
    Somewhere in the back of my mind I think I am remembering a post by Jack's mom (Angela) about wheelchairs and having better control of one arm than the other. Can't remember if there is an accessory or a certain type of chair that it is easier to push with one dominant hand. Full plate for me tonight, but when I get some time I will see if I can find the post or will ask Angela.

    Oh, and congrats on your decisiveness. I am about a year or so overdue on pulling the trigger for a wheelchair for Fletcher. I'm more of a researcher than a closer. What can I say.

  9. wow, that does sound like a tough day. when i read your post yesterday, i was thinking a stroller seemed fine. but then when i read the comments, i saw the reasons the wheelchair might be best. no one has mentioned wheelchair to us yet, but i am sure that word is out there, lurking in the future. i hope i handle hearing it with as much strength and practicality as you. good job today mama, you deserve to relax with a big glass of wine!

  10. Ditto to what Kelly commented. I was rooting for a stroller until the comments from yesterday's post, particularly from Becca's comment. It sounds like you've made a good decision for Charlie. Obviously I have nothing important to say in the matter but I just wanted to tell you I think you are doing an amazing job.

  11. I am so grateful for this post. We are going to be starting the process of picking out a wheel chair for Elisabeth in the next few weeks and you have given some great advice and pointers in this post. Thank you, thank you!

  12. Katy,

    I understand how you feel about choosing a wheelchair. I thought I should warn you that the first time you go out with your child in a wheelchair, you feel naked. But it does get better/easier.

    There is the ability to get a chair with a one arm drive but if Charlie is anything like Moo, i think you will find that the best way to get around is via the powerchair. I don't know if you have ever checked out http://www.rollercoasterparenting.blogspot.com – it's another Australian blog. Heike has two children with CP and without putting words in her mouth, she really wanted to address early mobility with her daughter as she felt that it kept her older son behind in his cognitive development.

    Take care,
    Jacqui

  13. I can imagine how exhausting and emotional it would be. It's a huge, huge step, nothing insignificant whatsoever about it. It's probably good that you are emotional about it. I don't know many people who would not be.

  14. I think you will like it too. We did get the stroller type, the kid cart, with full head control. We can remove pieces, but it's our first go around. We can get another one at 5 years, so I knew we could change. I hope it works out. Also, it is emotional, but I am almost relieved. People are beginning to ask me how old Jude is, and look at me funny. I guess I feel the wheelchair will explain it somewhat…….strange thought I guess.

  15. I had to leave a comment just to tell you how awesome you are. Charlie is truly blessed to have you for his mommy. I am so grateful that you have posted this post and the last post about this issue. It is opened my eyes. I never even thought about getting Ben a wheelchair at this stage. I thought we could use strollers for a long time to come. Now I realize that this isn't the best idea. And I've decided that when Daniel is no longer in the stroller with him, then Ben won't e in the stroller either. It'll be time for a wheelchair.

    These posts prompted a great discussion with Ben's private PT yesterday. She thinks you made the right choice btw.

    Good for you!

  16. Christine says:

    Hi. Just found your blog. Charlie is a sweet little boy. We too have a son who may or may not walk— we will have to wait and see. Currently he canuse a walker but since we just brought him home a month ago, we will have to see what the doctor's say long term. Anyway, just wanted to say that I have enjoyed reading the little bit that I have.

  17. The color usually takes the longest to decide on? Really? Wow…

  18. You keep having those high expectations! I do. So does Jeff. We don't know what God has in store for Charlie. He has already done lots of miracles for him. Personally, I don't think He is done with that boy. Love you.

  19. Miss Burb says:

    you'll have to tell us about it when you get the chair!

    I hate LilB's kid kart (wheel chair, sorta) It works for feeding him but we don't take it anywhere. And I'm still looking for near-floor seating options. Actually, we're hoping to get a Leckey Chair with a tray and wheels so he can play with his younger brother when he gets older. That and so he has a different position to play in.

    I really wish we had looked more into chairs because I don't care for ours. Yours looks awesome though!!

  20. Ack! I am late, late, late on this one! I think you made a perfect choice! Although I wanted to mention (it may be too late now) that we got a new version of the Quickie tilt and you CAN self propel. You just need 20" tires (I think) rather than the smaller ones. Although, we've had the chair for almost a year now and we've never used the tilt function. Another optional add on (and this can be added at any time I believe) would be the transportation tie down system. It's 4 points to which a wheelchair can be safely tied down on a school bus.

    Here is a link to our photo album that has good pics of Jack's quickie chair! please excuse my early morning attire (winter coat & capri pants, lol)

    This is one part of this process that is NOT my favorite (you already know that). Like I said, I think you'll be very happy with the quickie and please keep us posted!

    http://jacksmom.myphotoalbum.com/view_album.php?set_albumName=album81

    Hope that link works — if not let me know and I will email it to you :)

    Angela