Maggie Mobile

If not for her clever and very handy father, Maggie would be without the use of her wheelchair right now. The thing is falling apart. It has so many loose or missing parts it is a wonder that it is holding together at all. We are supposed to have professionals helping us in this area, but that help is not forthcoming. Hence, Superdad jumps to the rescue. Steve’s combination of epoxy, duct tape, reinforced screws and determination are all that holds it together right now. I have to hope and pray it makes it until Thursday when we have the first available repair appointment.

Maggie’s wheelchair is an amazingly over-engineered thing, which is customized for her needs. Maggie cannot simply be plopped into a generic wheelchair. She needs complete support for her head and trunk. The straps have to secure her but cannot interfere with the tracheostomy or gastrostomy tubes and care must be given to avoid undo pressure on the shunt in her head. The chair has to tilt in space so that Maggie get some relief from being upright without putting pressure on her spine, but should also recline so we can tend to her physical needs in the chair and minimize transfers. Believe it or not, the products offered from the manufacturers include many of these features and the rest are relatively easy to achieve through customizing a seat and strap system.

Impressive, but not complete; customization does not guarantee performance, however.

The wild card in this card game is Maggie. Once all those features are in place, the chair has to be fortified with kryptonite or something to prevent Maggie’s constant and very strong movements and tone from damaging all the components. Her personality is another huge factor. Maggie has never met a belt she can't unhook or a screw she can't undo. This is a generalization but I suggest that most individuals as disabled as Maggie is, who need all the bells and whistles of a fully supportive chair, either don’t move as much as she does or are more cooperative and kinder to their equipment. . We need a “Maggie mobile”, one that can stand up to her challenges.

Keep your fingers crossed that the headrest holds together until Thursday, that the footplates stay on (broken three times in the last week) and that we find something for Maggie to sit in while I take the chair in for work. It would be so nice if I could get some help with this given my current physical status, but that does not appear to be in the cards. Hence, the plan for Thursday is this:

 put her on the school bus as usual,

 drive to school get Maggie transferred into a power chair that she gets to use (which is a bit too small for her)

 take the empty chair to the shop,

 run to my doctor and get the stitches removed from my shoulder

 run back downtown to get the now repaired chair,

 return to school and transfer Maggie back,

 go home and have the school bus bring her home.

 Lather, rinse, repeat.

Note, I do not have a backup plan should the magical epoxy job fail between now and Thursday.

I need a pit crew.

Picture from Halloween 2007