Re: Brushing therapy & an introduction

[Guest guest]

Hi,

I have a 20 month old CHARGEr, Rose. I'll get my questions

out, then I'll introduce her in a second. I've been signed on to

the list since she was born and have periodically read through the

postings. We've had a " relatively " easy time so far, but I was

interested in a couple things and have finally decided to jump in.

I was interested in the brushing therapy, since we have just started

it a week ago. I do it 3 times a day, probably will for 6 weeks or

so (per her OT's suggestion). Her vocalizations seem to be louder

and her hands are slightly less sensitive already. What kind of

results have people seen who have tried it?

My other question is regarding Vital Stim therapy. We have just

started speech therapy with her and her therapist mentioned it to

help get her to swallow (she is g-tube fed, nothing by mouth). I've

already had one of her doctors say it's not worth trying. It does

seem like a major time intensive (and cost?) for something that

only " might " work. I was wondering if anyone has tried it and their

thoughts. She has progressed well in all other areas except

swallowing. She can only have barely a taste of anything and

sometimes we can give her something in the mesh bag type feeder.

Now, to introduce – she was born Oct. 3, 2005, our second

daughter (our other one is 3 ½). We live in Virginia. My husband is

a music director at a church, and I stay at home with the girls and

do some part-time administrative work from home. We too had no idea

anything was wrong before was born. I had a scheduled c-

section, and as they were cleaning her up, they had problems

suctioning her out. We were very fortunate in that the

neonatologist on duty at the time suspected CHARGE right away – he

even mentioned it to me while I was still in the recovery room (low

set ears, choanal atresia, facial palsy [which went away in the

first 24 hours]). So he knew all the test that should be done. They

gave us the print out from the Charge website, which was a bit

overwhelming. But slowly we were able to figure out what 's

issues were, and we were spared much by the fact that none of her

major organs were really effected. So the bottom line is: Coloboma

(bilateral) – but seems to be able to see well, Choanal Stenosis

[repaired], Cranial Nerves – swallowing, Floppy voice box (much

better now), Low set ears, Hearing loss (received hearing aids at 5

months – right ear is about 65dB, left is about 105dB), Hypotonia

(mostly in trunk, arms and legs ok, but hands are sensitive to

touch, so delaying her interest in crawling. Rolls well – the one

thing she did `on time' at 5 months), High Palate, Developmental

delay, Tiny PDA (not really an issue), Heart murmur [gone], Acquired

Torticollis [fixed], Plagiocephaly [fixed]. Her only surgeries have

been nasal stents placement (at 10 days old)/removal (at 2 months),

G-tube and Nissen (at 1 month); and tubes in her ears (at 15

months). She was in the hospital for about 7 weeks when she was

born. The only other hospitalization was for a reaction to a mix of

antibiotics, which, shall I say wiped out the good, the bad and left

the ugly. She became dehydrated so she spent 36 hrs. in the

hospital getting IV fluids. She's had OT since she came home from

the hospital. We have just added PT and speech (in March).

seems to be quite happy, but will let you know if you do something

she doesn't like. I feel like there is so much more to say, but if

you would like to see pictures and more of 's history/progress,

we have a Carepage site: www.carepages.com – RoseRoundtree. We

are planning to attend the conference in July and look forward to

meeting many of you there.

-

Mom to Elise (3 1/2), (Charger, 20 months), and wife to Ben

(for 6 years).

>

> I've meaning to mention this just as an interesting thing to

note. I'm not

> sure of the significance. We did Brushing Therapy with Aubrie

when she was

> little but never did it very regularly.