An economy

Today it struck me that Nathan alone is like an economy.

He needs a business manager. That’s me. Here are some of the things that I am CURRENTLY working on:

– Scheduling his PERCS surgery
– Finding an AAC clinic and setting everything up (paperwork etc)
– Getting his wheelchair (appealing with insurance)
– Switching his medicaid away from a managed car plan
– Changing Regional Center coordinators
– Finishing parent-training hours for ABA so he can start his ABA intensive
– Scheduling appointments with his therapy team
– Getting him assessed with the current usage of the Dynavox
– Dealing with our lawyer and the school district
– Ordering his supplements and replacing ones that we are running low of
– Renewals for his MB12 shots from a compounding pharmacy
– Creating new pages for his Dynavox

And so much more.

He receives services by many people to help care for him and improve his quality of life:

– Physical therapist
– Occupational therapist
– Full time nurse
– Medek practitioner “master” plus someone who comes to our house to DO medek with him daily
– Feldenkrais practitioner
– Aug Comm therapist
– Rolfer
– Homeopath
– Acupuncturist
– Chiropractor
– Music therapist
– Horse therapist
– ABR trainer
– Respite care worker
– Pediatrician
– Orthopedist
– Neurosurgeon
– Gastroenterologist
– Orthotist

These are the people that he sees on a regular basis.

His needs are many. He needs physical rehabilitation. He needs vitamins and supplements. He needs help with communication. He needs special educators. He needs doctors to look after western medical type stuff. He needs equipment – lots of it.

Staying up to date on rehabilitation and medicine and developments in the care of people with cerebral palsy is also important, as it helps to find out what’s going on so we can improve his quality of life.

And let’s not forget the fact that he IS ALSO just a regular kid, and needs to have fun too! And since he can’t have fun like regular kids can (for example, on a bike, running around at the park, etc), we also have to find ways to cater to his needs for him to have fun.

Why am I mentioning this? I realize I am kinda stating the obvious. I guess it just struck me just how much goes into caring for a child with such extreme needs like Nathan. I’ve been doing it all along, but in my usual chaotic halphazard way. Writing it all down makes me see exactly what’s entailed, how many people are involved, and how many different thing are involved!

And my point? I don’t know. Sorry. Guess this is mostly a ramble. I was just writing my todo list. And I caught a glimpse of the big picture too. So I posted. Anyways. I’ll get back to it 😉

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