Re: Too many services?/Heidi

[Guest guest]

Thanks for the reply. I have been following all of the

updates and think of you and her often. I hope she goes through the

surgery and recovery well.

It sounds like all of the mito families I've heard from receive a

lot less in the way of services than Sheldon is getting, I think he's

just being worked too much.

That's great that the signs are coming back so quickly, once

Sheldon loses a sign it seems gone until he relearns it.

That seems to be a good way to think about it - we've always

wanted the services to catch him up to 'normal' too. That's just not

going to happen. We need to concentrate on what we want him to be able

to do. And I want him to be happy.

- gets one hour each of

speech, OT, and PT per week. I plan

on asking about low vision/mobility services to be added after

comes back from the hospital. is good for 20

minutes of therapy, on a good day, and then falls asleep.

PT is

mainly doing equipment at this point. OT is doing cognitive and

play

skills. Speech is reinforcing signs and doing a little oral

motor

work. In the hospital 's Mito doc wanted NO extra

exertion so

PT did range of motion and stretching. She'll be using a stander

so

she can weight bear and have a change in position.

I agree that it's all about quality of life. I just had a

real

change in perspective with 's recent regression. I needed

to

shift my expectations to " therapy to help play with the

toys

that interest her " from " therapy that will make

typical. "

isn't typical and will never be typical. If therapy

stresses

her out, then we need to find out what aspect of therapy isn't

agreeing with her and change it. Doctors have suggested that

receive therapy 2,3 or more times a week in each area. I

would

pursue it if I felt it made ME feel better, but 's energy

levels would be the same. Right now the therapists give

suggestions

for activities to be tried throughout the week. gets

nursing

care and her nurses are able to work on things for a few minutes

here

and there. Her environment is set up to support her development,

people are willing to help extend any efforts she makes, and we're

supporting her body to free up her concentration for play.

We

can't 'make' her develop. Speech or PT every day for 3

hours a day

couldn't 'make' her develop. For us, the motor 'developmental age'

is

pretty meaningless. I stopped worrying about 'what age'

was

at and started looking at whether or not she can do the things

that

she wants to do. She could, so it wasn't an issue. When

people

asked me if she was walking I always said yes. The fact that she

was

walking with a walker was irrelavent. Same thing with " Can

she

talk? " She had over 100 signs and 'spoke' in sentences.

Of course

she could talk.

Right now has regained some signs and lots of

understanding

but her body isn't cooperating with most motor skills. Walking

is a

long way off if it returns. No amount of therapy will help

the

problems she's having if we don't address the big picture: her

body

is weakened by recurrent infections

and we need to get them under

control. We're doing more than

enough by ensuring excellent

nutrition, minimal body stress, rest,

and lots of elmo

's having lots of surgery next

Monday- hiatal hernia reduction

and diaphragm patched, fundo redone, pyloroplasty, j tube

revision.

She's home this week for a vacation. Please keep her in your

prayers!

Heidi, Mom to , 2, mito myopathy, TPN dependent, g and j

tubes, pseudo obstruction, neurogenic bladder and cathed,

dystonia,

dysautonomia, seizures, low vision and retinitis pigmentosa, RTA,

elmo's biggest fan!

Please contact mito-owner with any problems or

questions.

Yahoo!

Groups Sponsor

ADVERTISEMENT