Today was KayTar's first seating clinic appointment! She has needed mobility support for a long time, but until now we've been making due with regular strollers. The most recent stroller she has used is the Combi Strolee that has a weight limit of 55 pounds (which is why we bought it!). However, it is meant for a chubby toddler, not a long and lanky 7 year old, so it is NOT a great fit for her. Josh is looking forward to putting that thing on the curb!! Her need for mobility support, especially in community situations (the grocery store, mall, the Rodeo, the park, ect), is not going anywhere so it was time to finally take the plunge and look into getting a REAL chair for her.
Initially, we were thinking of just getting her a larger medical stroller because I didn't think she would be self-propelling much with her fatigue issues. However, insurance only pays for a chair every 5 years or so, so this will have to last until she is TWELVE most likely. I couldn't quite imagine a twelve year old KayTar still in a stroller! I talked to a friend who has experience with her kids in a similar situation and she advised me to think about a regular, very lightweight wheelchair, because it had made a big difference for her daughter when going from stroller to wheelchair and she actually was capable of self-propelling for some distances. I talked to KayTar about it and showed her the two kinds of chairs and asked her what she would prefer and she was pretty stoked about being able to push herself! So we went into clinic today with that in mind.
It feels a little weird getting a chair for a kid who can walk, even though it IS medically-necessary. In fact, Josh said, "Can we get her a shirt that says 'METABOLIC MYOPATHY' on it so people don't think we're working the system when she hops out of her wheelchair to go run on the playground?" Haha! She just CAN'T keep using a toddler stroller (I don't know how we've made it work this long!), so this is just what comes next for her. I'm sure we get plenty of stink-eye now from strangers with our 7 year old crammed in a tiny stroller. In fact, there is a whole blog (which I refuse to link to) that consists of people posting pictures of kids that are too big for strollers that random people snap out in public! It isn't a totally uncommon thing for a mobile kid to need a chair for fatigue/stamina problems, but for the general public, it just isn't what you think of when you think of a person needing a wheelchair! I didn't know exactly what to expect from the seating clinic because of her semi-unique situation, but it was very simple and straightforward. I answered some informal questions about her condition, how we thought she would be utilizing the chair on a day to day basis, and what kind of chairs we had in mind. It was a pretty quick process, but I was glad I had done a little research beforehand, because it was quick and they expected me to have some knowledge about what we wanted going into the appointment.
KayTar got to test-drive a wheelchair and she LOVED it! We could hardly get her out of it when it was time to go. She did great with it; driving, turning, stopping...it was neat! She declared it the BEST DAY EVER! After some discussion, we settled on the TiLite Aero X. I had been looking at the TiLite YR before the appointment, but the rep said that it is a very small, non-growable chair so it would not be the best choice for her. The OT recommended getting a swing-away front so she can use both her feet and arms to propel herself when she wants to, because a lot of kids are quicker/better at that duel propelling. Between those two recommendations and my request for a very lightweight chair, we settled on the Aero X. KayTar picked the color...hot pink, of course! And she wanted light-up front casters like the demo wheelchair had. She was so pleased and said, "Now people won't think I'm a baby in a stroller!" If all goes well, she should have her chair in about 2 months. I'm super excited because she is so excited!!
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| You'll have to imagine the light-up casters for now. |
