Re: Finally beginning to eat!

[Guest guest]

Michele-

I remember vividly be in your shoes when Aubrie was about the same age,

maybe a tad younger. I also wondered how we'd ever make the switch from

the tube to food. I'd have to look back to my records to see exactly

what we did and when. We eliminated all daytime feeds at some point.

She was totally oral by day with an overnight tube feeding. That went

on for some time. Then we gradually decreased the overnight feed until

it was gone!

I remember agonizing over every decision. In the end, it all worked out

just fine. I'm sure it will for Berkeley too. Keep your chin up even

when her progress seems to stagnate or even regress. It can be a long

process, but you are certainly on the right track! Keep doing what

you're doing and follow your instincts. In our case, the doctors

weren't much help. The decisions were made by me and our wonderful SP

who was very supportive of me and in-tune with Aubrie. We didn't find

any info suggesting eliminating daytime tube feedings, but it made sense

to us so we did it. We didn't know how Aubrie would learn the hunger

cycle if she kept having tube feedings during the day.

Anyway-- good luck to you!! And congratulations on Berkeley's terrific

progress so far!!

Michele W

mom to Aubrie (2.5 yrs) CHaRgE and (8 yrs), wife to DJ, in IL

west@...

[Guest guest]

Michele,

That sounds great, we are working on the very same things with Kennedy right now. I know what you mean about turning away from the spoon, she's been doing that a lot lately. But, we are getting there, it's just a patience/time issue really.

How is Berkeley's weight doing? I wouldn't worry so much about the calories if her weight is going along okay.

Keep us posted, this is great news!Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Finally beginning to eat!

I just had to write and share with everyone about how well Berkeley is doing eating. She has had her g-tube since she was 5 weeks, and prior to that made only minor attempts to take a bottle. She was in and out of the hospital so much this last year that we didn't make any real attempts to start oral feeding until about 3 months ago.We started with jarred baby food, primarily fruits, straight out of the fridge. She seemed to hate all foods equally and I often thought that it looked more like forced feeding. For the first month she basically spit out everything that went in and turned her face to avoid the spoon. About 6 weeks ago we really got with the program and got our home nurses to oral feed for at least 30 minutes prior to every tube feeding. It has made a huge difference. Her speech pathologist was thrilled when we saw her yesterday (we go every 2-3 weeks), Berkeley is eating about 1/2 a jar at a time! She is swallowing easily (in the beginning you could hear her gulp every time she swallowed) and occasionally opening her mouth in anticipation of the next bite. The SP says we just need to keep increasing the amount of food she's getting and decreasing the formula that she's getting. Of course I am scared to death that she won't get enough calories. Anyone have any suggestions on how to best go about this?It feels great to share this with people who understand. Thanks a million.Michele, mom to Berkeley 14mo CHARgE & 5For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Congratulations to Berkley!!! She has come a long way! We never really backed

off much on the pediasure with . He just ate more and more and grew by

eating more solids. He does not drink well and we all felt more comfortable

knowing that he was getting liquids, calcium, vitamins, and all the good stuff.

He gets 20 ounces of pediasure and about 6+ ounces of water by tube and usually

drinks 2-4 ounces. He has a healthy appetite and enjoys healthy foods (lots of

vegetables and fruits and cheeseand meat) as well as crackers and cookies.

Cheryl, , (6), (4, CHaRGE)

MI

>>> hatfield@... 08/01/00 12:21PM >>>

I just had to write and share with everyone about how well Berkeley is doing

eating. She has had her g-tube since she was 5 weeks, and prior to that made

only minor attempts to take a bottle. She was in and out of the hospital so

much this last year that we didn't make any real attempts to start oral feeding

until about 3 months ago.

We started with jarred baby food, primarily fruits, straight out of the fridge.

She seemed to hate all foods equally and I often thought that it looked more

like forced feeding. For the first month she basically spit out everything that

went in and turned her face to avoid the spoon. About 6 weeks ago we really got

with the program and got our home nurses to oral feed for at least 30 minutes

prior to every tube feeding. It has made a huge difference. Her speech

pathologist was thrilled when we saw her yesterday (we go every 2-3 weeks),

Berkeley is eating about 1/2 a jar at a time!

She is swallowing easily (in the beginning you could hear her gulp every time

she swallowed) and occasionally opening her mouth in anticipation of the next

bite. The SP says we just need to keep increasing the amount of food she's

getting and decreasing the formula that she's getting. Of course I am scared to

death that she won't get enough calories. Anyone have any suggestions on how to

best go about this?

It feels great to share this with people who understand. Thanks a million.

Michele, mom to Berkeley 14mo CHARgE & 5

For information about the CHARGE Syndrome

Foundation or to become a member please

contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

[Guest guest]

-

I have been concerned lately about Berkely's weight. She weighs 13lbs 9oz; only

a 9oz increase in the last eight weeks. We already have her on 8oz of formula

every 4 hours and I don't think she could handle any more.

Re: Finally beginning to eat!

<< File: ATT00009.html >> Michele,

That sounds great, we are working on the very same things with Kennedy right

now. I know what you mean about turning away from the spoon, she's been doing

that a lot lately. But, we are getting there, it's just a patience/time issue

really.

How is Berkeley's weight doing? I wouldn't worry so much about the calories

if her weight is going along okay.

Keep us posted, this is great news!

Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

Finally beginning to eat!

I just had to write and share with everyone about how well Berkeley is doing

eating. She has had her g-tube since she was 5 weeks, and prior to that made

only minor attempts to take a bottle. She was in and out of the hospital so

much this last year that we didn't make any real attempts to start oral feeding

until about 3 months ago.

We started with jarred baby food, primarily fruits, straight out of the

fridge. She seemed to hate all foods equally and I often thought that it looked

more like forced feeding. For the first month she basically spit out everything

that went in and turned her face to avoid the spoon. About 6 weeks ago we

really got with the program and got our home nurses to oral feed for at least 30

minutes prior to every tube feeding. It has made a huge difference. Her speech

pathologist was thrilled when we saw her yesterday (we go every 2-3 weeks),

Berkeley is eating about 1/2 a jar at a time!

She is swallowing easily (in the beginning you could hear her gulp every time

she swallowed) and occasionally opening her mouth in anticipation of the next

bite. The SP says we just need to keep increasing the amount of food she's

getting and decreasing the formula that she's getting. Of course I am scared to

death that she won't get enough calories. Anyone have any suggestions on how to

best go about this?

It feels great to share this with people who understand. Thanks a million.

Michele, mom to Berkeley 14mo CHARgE & 5

------------------------------------------------------------------------------

------------------------------------------------------------------------------

For information about the CHARGE Syndrome

Foundation or to become a member please

contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

[Guest guest]

Michele,

What about maybe lowering the tube feeds in the day time to help push along the oral stuff and putting her on a night feed if she isn't already?

By the way, Kennedy drank almost 2 ounces of water for the 1st time in her life today (1st time drinking anything!) We used a little plastic drinking box type bottle and I just put the straw part in her mouth and squeezed a little bit in at a time. She kept rubbing her tummy going umm ummm...what a ham.

Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Finally beginning to eat! I just had to write and share with everyone about how well Berkeley is doing eating. She has had her g-tube since she was 5 weeks, and prior to that made only minor attempts to take a bottle. She was in and out of the hospital so much this last year that we didn't make any real attempts to start oral feeding until about 3 months ago. We started with jarred baby food, primarily fruits, straight out of the fridge. She seemed to hate all foods equally and I often thought that it looked more like forced feeding. For the first month she basically spit out everything that went in and turned her face to avoid the spoon. About 6 weeks ago we really got with the program and got our home nurses to oral feed for at least 30 minutes prior to every tube feeding. It has made a huge difference. Her speech pathologist was thrilled when we saw her yesterday (we go every 2-3 weeks), Berkeley is eating about 1/2 a jar at a time! She is swallowing easily (in the beginning you could hear her gulp every time she swallowed) and occasionally opening her mouth in anticipation of the next bite. The SP says we just need to keep increasing the amount of food she's getting and decreasing the formula that she's getting. Of course I am scared to death that she won't get enough calories. Anyone have any suggestions on how to best go about this? It feels great to share this with people who understand. Thanks a million. Michele, mom to Berkeley 14mo CHARgE & 5------------------------------------------------------------------------------------------------------------------------------------------------------------ For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

-

I hadn't thought about adding the night feeds for calories. That's a great

idea. Something else to ask our Paed about.

Congratulations to Kennedy! 2oz of water is quite a bit, especially on the

first try. I think that's fabulous. Give her a big hug from us.

Bottoms up!

Michele

Re: Finally beginning to eat!

<< File: ATT00013.html >> Michele,

What about maybe lowering the tube feeds in the day time to help push along the

oral stuff and putting her on a night feed if she isn't already?

By the way, Kennedy drank almost 2 ounces of water for the 1st time in her life

today (1st time drinking anything!) We used a little plastic drinking box type

bottle and I just put the straw part in her mouth and squeezed a little bit in

at a time. She kept rubbing her tummy going umm ummm...what a ham.

Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

Finally beginning to eat!

I just had to write and share with everyone about how well Berkeley is doing

eating. She has had her g-tube since she was 5 weeks, and prior to that made

only minor attempts to take a bottle. She was in and out of the hospital so

much this last year that we didn't make any real attempts to start oral feeding

until about 3 months ago.

We started with jarred baby food, primarily fruits, straight out of the

fridge. She seemed to hate all foods equally and I often thought that it looked

more like forced feeding. For the first month she basically spit out everything

that went in and turned her face to avoid the spoon. About 6 weeks ago we

really got with the program and got our home nurses to oral feed for at least 30

minutes prior to every tube feeding. It has made a huge difference. Her speech

pathologist was thrilled when we saw her yesterday (we go every 2-3 weeks),

Berkeley is eating about 1/2 a jar at a time!

She is swallowing easily (in the beginning you could hear her gulp every

time she swallowed) and occasionally opening her mouth in anticipation of the

next bite. The SP says we just need to keep increasing the amount of food she's

getting and decreasing the formula that she's getting. Of course I am scared to

death that she won't get enough calories. Anyone have any suggestions on how to

best go about this?

It feels great to share this with people who understand. Thanks a million.

Michele, mom to Berkeley 14mo CHARgE & 5

------------------------------------------------------------------------------

------------------------------------------------------------------------------

For information about the CHARGE Syndrome

Foundation or to become a member please

contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

------------------------------------------------------------------------------

------------------------------------------------------------------------------

For information about the CHARGE Syndrome

Foundation or to become a member please

contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

[Guest guest]

Thanks Michele,

She also ate a bit of a freezie (about 1/2) and about 8 spoonfuls of lemon pudding today.

Keep plugging along that's all there is to do. And keep it happy!

Good luck with the night feed thing.

Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Finally beginning to eat! I just had to write and share with everyone about how well Berkeley is doing eating. She has had her g-tube since she was 5 weeks, and prior to that made only minor attempts to take a bottle. She was in and out of the hospital so much this last year that we didn't make any real attempts to start oral feeding until about 3 months ago. We started with jarred baby food, primarily fruits, straight out of the fridge. She seemed to hate all foods equally and I often thought that it looked more like forced feeding. For the first month she basically spit out everything that went in and turned her face to avoid the spoon. About 6 weeks ago we really got with the program and got our home nurses to oral feed for at least 30 minutes prior to every tube feeding. It has made a huge difference. Her speech pathologist was thrilled when we saw her yesterday (we go every 2-3 weeks), Berkeley is eating about 1/2 a jar at a time! She is swallowing easily (in the beginning you could hear her gulp every time she swallowed) and occasionally opening her mouth in anticipation of the next bite. The SP says we just need to keep increasing the amount of food she's getting and decreasing the formula that she's getting. Of course I am scared to death that she won't get enough calories. Anyone have any suggestions on how to best go about this? It feels great to share this with people who understand. Thanks a million. Michele, mom to Berkeley 14mo CHARgE & 5 ------------------------------------------------------------------------------ ------------------------------------------------------------------------------ For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org ------------------------------------------------------------------------------------------------------------------------------------------------------------ For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org