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At age 11 and out of the blue, Jimmy lost his balance. His diagnosis is Acute Cerebellar Ataxia. He is currently wheelchair bound and we are working hard to find whatever it is that we need to fix. Here's where I'll try to keep everyone in the loop about what's going on.

Friday, May 21, 2010

Friday, May 21

Sorry about not updating yesterday, did everyone just assume that I’d finally gone ahead and jumped out the window? We were all a little down in the dumps after that disappointing PT assessment, but today is a new day and we’re back to looking on the bright side.

Got a lot done yesterday; it went a little something like this:

Call neurologist, as discussed with PT, to let him know that the PT report and prescriptions for a wheelchair and twice-weekly sessions would soon be crossing his desk, and we’d appreciate a quick approval. Result: Left a message.

Call medical supply company suggested by PT to ask if they rent pediatric models. Result: They don’t do rentals.

Call PT just to check in and make sure that the report was being submitted today. Also asked what else I could do to expedite the approval of PT so we can get started right away. Also informed that suggested vendor does not do rentals and ask for guidance to find one who does. Result: left message.

Return call from PT, report in hand. She gave me the name of a medical supply company who had two chairs in stock that might work, one slightly too small and one slightly too large. She reiterated that although I had requested a walker or cane, she could not yet recommend these things based on her assessment. We can do that later (because it’s so easy to get stuff when you need it). Confirmed that I had called neurologist to inform him that stuff would soon cross his desk for signature. They are in the same building.

Another call from PT, noticed my insurance provider – thinks they will require authorization from primary care physician rather than specialist. Discussed how it’s easy to get a direct message to the neurologist and he calls back within 24 hours, but at the pediatrician I know the numbers to get a human person on the phone, and that’s always better. Note to self: PT is awesome.

Call pediatrician, get human person on the phone who agrees to write my message down and put it on the doctor’s desk. The message is that two items will soon cross his desk for approval.

Call medical supply place, verify that now is a good time to come in.

Pick up Jimmy from school, take him to the extremely weird medical supply place. He fantasizes about getting a tricked out wheelchair . Arrive at medical supply place, see wheelchairs, cringe. The pediatric model fits his skinny frame, but this is a kid who insists that his size 3 feet are really a 6 and that all of his jeans are “tiny”. The “narrow adult” model is just like the one we’ve already got. We take the pediatric one. He starts bitching about it before we even get to the car.

Take Jimmy back to school, where he refuses to get out of the car and into that stupid tiny wheelchair. He likes the old one. I do not accept this refusal, agree that if he still hates it by the weekend, we’ll keep looking around.

Back to work where I am generally unpleasant and surly to everyone. Called my husband to warn him against saying anything other than “what an awesome chair!” when he goes to pick the kids up from school.

Rushed to the gym for a TKB workout. Bliss.

Missed three calls during that one hour class, two regarding Clara’s upcoming birthday party, one from Bill who wants to know why I’m freaking out, Jimmy loves his new chair.

Breathe.

Meet up with the family for dinner, then go home and enjoy a rousing game of murderball in the back yard.

Help Jimmy with his PT regimen, showing Bill and Clara the moves. Try to convince the dog that just because the boy is on the floor, he is not playing.

Homework, showers, laundry, etc.

Collapse.

So far, today is more calm. I promised the PT that I would not start checking up on the scheduling office until Monday since they didn’t get her report until noon yesterday. Tonight the kids are both performing in a music festival at school, and we are all looking forward to a quiet weekend. Oh, except for Jimmy and Bill, who are indeed going to play laser tag at a birthday party tomorrow! Bill gets to push the wheelchair so that Jimmy’s hands are free to hold the gun. Boys are weird.

5 comments:

  1. Just writing to let you know that we're keeping up with all of this frustrating news, optimistic feelings, funny moments, hopeful moments, scared times, sad times, and all the love love love that is in these posts. We can't add anything to them. We just want you to know we're reading. YOU ARE ALL IN OUR THOUGHTS.
    Meg and Mark

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  2. your posts are almost better than the grey's finale, and funnier than ...A Chappelle episode!

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  3. Jacquie, you could have a third blog, just about the trials and tribulations of the wheelchair. Too big, too small, like the old one, like the new one. Think of the photo-ops! Sister in chair, dog in chair, holding gun while in chair......

    Love it, schnookie. And as always, hang in there. And put coffee beans in your coffee.

    Love you.
    Ellie

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  4. I feel really sad for Jimmy tell clara I said HI hope he feels better

    Cecilia Lopez

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  5. dymmphna andersonMay 22, 2010 at 10:32 AM

    You go girl! It's amazing..all the things you tackle these days! Big hugs to you and your family! Ryan would love to hang out with Jimmy! Have a restful weekend!

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