Made of Gray

Adaptive Trouble

Holly D Gray17 Comments
The trouble with adaptive anything is that it
Just. Doesn't. Fit. My. Kid
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The bath chair - Either way you look at it the darn thing is too high or too short for my back to bathtub ratio. My back hurts more when I use it and Caleigh doesn't get as clean. We haven't used it for months. It's currently being used as a diaper changing station....sometimes. A bathtub cushy mat is doing the job with Caleigh laying on her back. Cost for the bath chair was around $500. The bathmat was $10.
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The brand new potty chair - We've had it for over a week now. Caleigh has tinkled on it once. Just once. The splash guard in the front of the seat (made for boys) cuts into her chubby thighs. The marks left on her tushy after a 5 minute sit is just terrible. Yes, she can sit "all by herself" in the chair with the proper straps, but that doesn't help the fact that she just doesn't feel safe and comfortable enough to perform. So we've gone back to the Baby Bjorn potty chair. Why ruin what has been going so good? Rifton Potty Chair was around $600. Baby Bjorn was about $20.
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I'm trying to come up with an adaptation for the new potty chair, but honestly my brain is toasted on the subject. Why after paying hundreds of dollars and waiting months for approval, we as parents must then use every last ounce of energy to adapt what is already supposed to be adapted?
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The Kidwalk Gait Trainer - It's been tons of fun watching Caleigh get better and better at taking steps with the Kidwalk, but the original headrest that came with the set up was far too small. Caleigh spent most of her time looking up, head hooked around the side of the headrest. Yesterday our equipment people came out with several headrests to try out. We went with a tri-fold design and extended the side pieces outwards. The headrest is actually installed upside down. So far so good. Caleigh walked around our cul-de-sac for an hour this afternoon and she actually held her head more in the middle and forward than she ever has. We found a winner...so far.
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The Leckey wheelchair - The chair itself works great as a seating system on the high-low base, but Caleigh's head has never stayed within the areas of the headrest. With the tray on the chair she can sit completely upright and use it to hold herself up. Even then she constantly wraps her head to the side and then up under the head rest. We pick her head back up and then she moves it right back stuck under the headrest. We recline her chair, she does the previous just the same only she works harder to achieve the feat. The wheelchair, outside our home, has been inactive for months now. When we leave the house we use an umbrella stroller that is probably the worst positioning chair around, BUT Caleigh's head stays in place and the chair isn't a battle. A side-effect of the umbrella stroller is the constant sleepy baby comments, and at 33 pounds, Caleigh is close to the weight limit.

I actually had a women, in Target, tell her rambunctious toddler "look at that sweet baby girl sitting SOooo still in her stroller" "She's being such a good girl" "Can you be a good boy for mommy?"
Really lady? An educational moment? Seriously sweetie?
If she only knew.........
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A new headrest for the wheelchair is on it's way. Probably a month or two down the road. It's just like the new one on the Kidwalk. More of a tri-fold design. I would like to have high hopes, but at this point we'll just wait and see.
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The Orthotics - I just recently wrote about our AFO woes. We took Caleigh for a second opinion with a different company last week. Same song and dance different location. The company that we went to uses DAFOs. Our insurance already paid for the current pair. So unless we fork over $1400 for a new pair; we'll be waiting another 6 months until insurance will approve another pair. The people we met with really didn't offer any new suggestions and basically said that the braces that we have should be working. They told us that her feet are too small and that once her feet get bigger we won't have the problem of her pulling out. I don't get it. Maybe it's physics, who knows? I asked about SMOs, two piece construction, hinged and basically anything I could find on the internet. They didn't feel like anything different would work right now. Caleigh needs something that works. Her ankles are getting tighter everyday. Putting on a brace for 2 minutes doesn't give a good enough stretch. I just don't know what to do. To top it off, I called our current company about making adjustments and we have to wait 4-6 weeks for that. I'm just so frustrated with the whole thing.

Today we got word that Caleigh's powerchair will be delivered to our DME place in 2 weeks. At that point they will put it together and then deliver it. We could have independent mobility by Thanksgiving. I'm sure the chair will come with obstacles, but I'm trying to be optimistic about it.

Basically, we have learned the value of patience, mixed frustration and most of all, one size does NOT fit all!
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