Last August (2012) Annie's doctors agreed that Annie needed a new wheelchair with a custom molded seat back to better fit her curving back from her severe scoliosis. The molded seat back would also act as a brace to help support her back and potentially slow the progression of her curve.
By the beginning of September (2012) we were able to coordinate a time to meet with Annie's physical therapist and medical suppliers--two specialists that would help offer suggestions of parts, based on what the physical therapist deemed necessary for Annie's support. That meeting took about 2 hours to go inch by inch over every aspect of what her new chair would comprise. We chose everything from the footplates to the headrest to what type of specialized foam Annie would require in her seat cushion to accommodate her tilted pelvis and dislocated hip. Every single aspect of the chair was considered.
We got the designing done and then sent everything off to insurance for approval to move ahead. Annie has two medical insurance providers, so it took 6 months of lots of phone calls, extra paperwork, and extra letters of medical necessity from doctors and therapists for more specific details concerning certain parts of her chair. Finally in February (2013) the paperwork was done and we had approval for her $11,000 wheelchair from both insurance companies. It was a VERY happy day!
Then in early March (2013) we were able to move ahead with the process and get Annie molded for the custom seat back. We spent about an hour at the medical supplier helping to position Annie into a huge foam-filled bean bag which was then vacuum sealed to create the mold of her back from which her seat back would be made. The mold was sent in for the seat back to be made (or so we thought) and the rest of the chair parts were ordered!
In April (2013) we received the call that it was ready! We eagerly went to have her wheelchair fitting, only to find out there was a huge miscommunication about the very expensive custom seat back, and the mold had never been sent in for the seat back to be made! We were told that the custom seat back was too expensive to get for Annie if we planned to have her scoliosis surgery in the next few months anyway! However, the insurance had already approved it! Long story short, we left the medical supplier that day very disappointed and spent two weeks making phone calls with the physical therapist, orthopedist, and medical supplier, and getting more back x-rays before getting the issue all straightened out. The mold was finally sent in for her seat back to be made. The brakes and arm rests had also been ordered incorrectly, so the correct parts were ordered again.
This week, we received the call, again, that her chair was ready and to come in for her wheelchair fitting. The good news was that the brakes and armrests were correct this time, but the $4000 molded seat back was made incorrectly and did not provide the support where Annie needed it, causing her to tip out of her chair to one side. The molded seat back is one solid piece that wraps around Annie's sides to support her laterally. However, when they made the seat, they cut the lateral supports down too low. In order to compensate for this, we've had to raise the seat back up about 6-7 inches in order to get the lateral supports up high enough in her arm pits. However, in doing this, the entire contour of the seat that was molded to her back doesn't fit or line up causing areas of pressure and redness and causing areas of no support along her spine. It also has made the top of the seat back much higher above her shoulders than it should be, causing her chest harness to not fit properly either, causing a red sore on her neck where it rubs.
Shockingly, the medical supplier didn't think the seat height was an issue and disregarded our concerns about it and we left on our way, feeling unsettled about how Annie fit in this chair. The next day we met with Annie's physical therapist to get her advice. She agreed that the seat back was not fitting properly in its raised position and further modifications to it would be required. So that's where we are now... we'll go back to the supplier next week for some further modifications, but with such extensive modifications needed, we're skeptical that this seat back will be able to fully meet Annie's needs, and a new seat back might need to be ordered, which would take another 2 months.
On the plus side, we love the general design of her new chair. Since she has the custom molded back, there is less bulk and the frame of her new chair is much narrower which makes it a lot easier to maneuver through our home and to get her into our van. Her new chair makes her sit higher up off the ground, and has a shorter and lower-profile handle bar. Her tilt mechanism which has previously been controlled by levers up on her handlebars is now controlled by a foot pedal by her brake, which keeps the cables out of the way. Her bottom seat cushion was made with a more distinct leg length difference to better accommodate her legs, and eliminated the need for an abductor between her knees. Her new headrest is less bulky and less contoured than her previous one making it easier to do her hair and giving her more control on her own head placement. And to top it all off, her new frame is a glittery, sparkling silver! We are thrilled with so many aspects of this chair and really look forward to getting the molded seat back issue resolved in order for it to truly be the perfect chair!
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| Looking back... This is Annie's second wheelchair on the day that she got it, when she was 4 years old. After using it for 7 years, and having the seating system in it replaced once as she grew, it was definitely time for a new chair! (Was she ever REALLY that small!!) |
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| Annie's new chair (her third) on the right--much narrower, but with an ill-fitting custom molded seat back still needing further adjustments. you can see how large the gap is between the bottom seat cushion and the seat back where it was raised up to try to support her better. (The head rest is missing from her old chair because they transferred the hardware onto the new chair for the new headrest.) |
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| You can see on her old chair where her lateral supports are to help support against her scoliosis curve. The new seat back was made incorrectly and we're struggling to get the needed support with it. That's why it was raised up so high, to help get the lateral supports in the right place, but now the molding all doesn't fit her right. |
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| You can see the lower profile headrest, shorter handlebar, and more dramatic leg length difference in the bottom seat cushion. |
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| Since we had to raise the seat back up 6-7 inches to get the lateral supports under her arm pits where she needs the support, the top of the chair extends WAY too high above her shoulders which puts the headrest in the wrong position and causes her chest harness to rub on her neck. Hopefully next week they will be able to cut down some of the height on the seat back. |
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| The chair really is great, and will be incredibly fantastic once we can resolve the custom seat back issues, and get her a seat back that is truly molded to her back and gives her the support where she needs it. (She looks like she's missing her glasses, right? I'm still trying to get used to no glasses on her! In this picture you can also see the boney growths on her left knee that have grown where the huge crater was in her bone caused by her dislocated kneecap.) |
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