15 month old charger - need advice

[Guest guest]

Hello everyone:

1) Nettie Faith - 15 month old " charger " who undegoes intensive

Occupational Therapy, Physical Therapy, Speech Therapy, Auditory

Therapy etc. (wear a cochlear implant since she's hearing impaired) -

had made slow but steady progress. She still cannot sit up

independantly, not completely roll over. Is this similar to your

experience?

2) Nettie Faith - severe ocular photosensitivity- sunglasses with

canopies etc. outside during the day do not help her. In many

therapy sessions, we have to turn the lights off. Any ideas?

3) Seem to be in a catch 22 of trying to get Nettie to eat orally and

this reliance on g-tube feeding for growth and development etc. She

still has an overnight feed - she's now 16lbs. which is a reasonable

weight - all her weight gain is really due to the g-tube feeds, but

how can I get her to really eat orally in significant quantities?

ALL ADVICE IS APPRECIATED.

CBB

[Guest guest]

I can only address the photosensitivity. My daughter is 19 and attends

Perkins. As a family we've been aware of the problem for years, and I know

that the Perkins team is, too. However, we always forget - all of us. I just

mailed her clothes back to Watertown and must have sent 7 hats, not to

mention sunglasses. Let's put it this way, does not tell us that the

sun drives her nuts, but it does... It's up to the adults around her to make

sure she deals with the issue. Martha

Please note: when was little, she had no time at all for sun

glasses. Hats, however, worked well.

[Guest guest]

Hi,

My son is now 6. He sat up by himself at 16 mths, I think he rolled

over around 9 mths, he rolled everywhere for a long time until he could

crawl which was also around 16 mths, because we never let him back scoot.

He stood up independently at 16 mths as well. It was like a surge of

development all at once. He walked at age 2 years and 4 mths, he crawled

for a year and a half which wasn't a bad thing, because it built up his

upper body.

Keep with the therapies, as for they will be never-ending. Keep working

with her at home, and don't ever let up or give up, she will do it!

Feeding - my son, age 6 is still today g-tube fed. He is all very aware

what it is, how to prepare it, hook himself up etc., but he still has a

physical swallowing problem which has gotten better over time. He has had 2

fundos as well. He wants to eat orally and will in time, just not right

now. He weighs 44 lbs and is 44 3/4 inches tall. He is an average height.

This is definitely because of the g-tube. He could care less if he got his

tube feeding, he is rarely hungry. Sometimes he does want it but then tells

me he is full after only150cc.

Keep plugging away, my son is very functional, very smart, speaks butr needs

speech and sign together to get everything you are saying due to severe

hearing impairment. He still gets PT 2 times a week, OT 4 times a week,

Speech 5 days.

We do not have the sight issue you have, we have other stuff.....

Hope this helps. Good luck.

Debbie Matasker

15 month old " charger " - need advice

Hello everyone:

1) Nettie Faith - 15 month old " charger " who undegoes intensive

Occupational Therapy, Physical Therapy, Speech Therapy, Auditory

Therapy etc. (wear a cochlear implant since she's hearing impaired) -

had made slow but steady progress. She still cannot sit up

independantly, not completely roll over. Is this similar to your

experience?

2) Nettie Faith - severe ocular photosensitivity- sunglasses with

canopies etc. outside during the day do not help her. In many

therapy sessions, we have to turn the lights off. Any ideas?

3) Seem to be in a catch 22 of trying to get Nettie to eat orally and

this reliance on g-tube feeding for growth and development etc. She

still has an overnight feed - she's now 16lbs. which is a reasonable

weight - all her weight gain is really due to the g-tube feeds, but

how can I get her to really eat orally in significant quantities?

ALL ADVICE IS APPRECIATED.

CBB

[Guest guest]

Hi,

My son is now 6. He sat up by himself at 16 mths, I think he rolled

over around 9 mths, he rolled everywhere for a long time until he could

crawl which was also around 16 mths, because we never let him back scoot.

He stood up independently at 16 mths as well. It was like a surge of

development all at once. He walked at age 2 years and 4 mths, he crawled

for a year and a half which wasn't a bad thing, because it built up his

upper body.

Keep with the therapies, as for they will be never-ending. Keep working

with her at home, and don't ever let up or give up, she will do it!

Feeding - my son, age 6 is still today g-tube fed. He is all very aware

what it is, how to prepare it, hook himself up etc., but he still has a

physical swallowing problem which has gotten better over time. He has had 2

fundos as well. He wants to eat orally and will in time, just not right

now. He weighs 44 lbs and is 44 3/4 inches tall. He is an average height.

This is definitely because of the g-tube. He could care less if he got his

tube feeding, he is rarely hungry. Sometimes he does want it but then tells

me he is full after only150cc.

Keep plugging away, my son is very functional, very smart, speaks butr needs

speech and sign together to get everything you are saying due to severe

hearing impairment. He still gets PT 2 times a week, OT 4 times a week,

Speech 5 days.

We do not have the sight issue you have, we have other stuff.....

Hope this helps. Good luck.

Debbie Matasker

15 month old " charger " - need advice

Hello everyone:

1) Nettie Faith - 15 month old " charger " who undegoes intensive

Occupational Therapy, Physical Therapy, Speech Therapy, Auditory

Therapy etc. (wear a cochlear implant since she's hearing impaired) -

had made slow but steady progress. She still cannot sit up

independantly, not completely roll over. Is this similar to your

experience?

2) Nettie Faith - severe ocular photosensitivity- sunglasses with

canopies etc. outside during the day do not help her. In many

therapy sessions, we have to turn the lights off. Any ideas?

3) Seem to be in a catch 22 of trying to get Nettie to eat orally and

this reliance on g-tube feeding for growth and development etc. She

still has an overnight feed - she's now 16lbs. which is a reasonable

weight - all her weight gain is really due to the g-tube feeds, but

how can I get her to really eat orally in significant quantities?

ALL ADVICE IS APPRECIATED.

CBB

[Guest guest]

hi Beth

welcome to the list... my ds Josh is quite sensitive to the light ... he

also has glaucoma in one eye, when the pressure of that eye is high he is

even more sensitive ... at the moment it is at a good pressure but he still

needs a hat on a cloudy day, and a bright sunny day is just awful for him...

seriously hoping that he will wear some little 'baby bands' sunglasses as

summer is just around the corner for us here in NZ ... and hopefully they

will help!

on the growing front ... ds is not gaining at any great rate ... he totally

reliant on gtube feeds for nutrition, although he is managing small amounts

of baby food now ... as i understand it some people with 'charge' do not

have big appitites, and also find it hard to gain weight even with large

amounts of calories., gotta run, don't usually find much time to post ...

but just post again if you have more questions .. . as we just get busy

sometimes and don't have time to reply

ds Ben 5-4-99, ds Josh 20-8-02 CHaRGE'r uclbcp

----- Original Message -----

> 2) Nettie Faith - severe ocular photosensitivity- sunglasses with

> canopies etc. outside during the day do not help her. In many

> therapy sessions, we have to turn the lights off. Any ideas?

> 3) Seem to be in a catch 22 of trying to get Nettie to eat orally and

> this reliance on g-tube feeding for growth and development etc. She

> still has an overnight feed - she's now 16lbs. which is a reasonable

> weight - all her weight gain is really due to the g-tube feeds, but

> how can I get her to really eat orally in significant quantities?