Re: Stacey/all- Too many services?

[Guest guest]

Asenath also has quite a bit of therapy presently. She receives 1 hour PT,

2 hours SP/cognitive, and two hours OT weekly. One hour each weekday.

Zipporrah has 1 1/2-2 hours SP/feeding/cognitive and 1 hour PT bi-weekly,

but weekly starting this week due to regressions. We haven't minded Asenath

having so much as long as improvement is seen. We always cancel if she/they

are overly tired, run down, or ill. At times I have questioned the PT as it

has seemed a waste of time as she has had so many regressions that every

time we would make progress, she would have another episode and regress

again, but she is already 1 1/2 to 2 1/2 years behind in her PT abilities so

we continue to try to keep the weekly therapy session if possible. We

really like having the SP/cognitive and OT twice weekly as we have seen more

progress with them seeing her more frequently compared to when it was only

once weekly. The girls seem to enjoy their therapy and so I am supportive

of their going, but if it became burdensome or too much I would definitely

take a break.

Lots of good advice given on this topic it seems.

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (11 mon.) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Too many services?

>

> This all makes me wonder - Is Sheldon receiving too many services?

> Maybe he would do better with more time off. Right now he's receiving

> 10 services a week, that's every weekday morning. Except for PT,

> they're all extended, 1 to 1.5 hours. That's a lot. Speech is 3 times

> a week and spec. ed. is 2 or 3 times a week. PT/OT twice a week.

> Maybe more isn't necessarily better.

>

> How many services are other kids receiving?

> --

> ----------

> Stacey Fleming

> flemings@...

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

- 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!