Feeding Questions

[Guest guest]

Hi everyone,

I haven't posted in quite a while, but I do try and stay on top of the posts.

I have some questions regarding feeding. Raegan just turned two on May 15 and

she is doing great, she can walk about 15-20 feet independently and she is

talking and signing up a storm. Raegan has had a g-tube since birth and we have

not had to use it since February 6! We have a swallow study scheduled for July

and then we'll begin to discuss removing the tube. Right now she eats mainly

baby food, yogurt, applesauce, pudding, basically anything pureed and we are

working on increasing her texture, she can handle small chunks of banana and

avocado. Also, she only drinks from the open nosy cup. She did not start eating

until she was around 18 months, so I know this is great progress. I'm just

curious, is this normal progression, or much slower and any ideas how to

increase texture and her willingness to eat independently, like pick up finger

foods. Also, she is teething right now and her fluid

intake has decreased, do CHARGE kids tend to not drink as much? I know from

reading that Eva no longer has her feeding tube, Crystal, if you don't mind,

what's her daily feeding schedule like? BTW, she weighs 24 lbs 4 oz and is 32

5/8 " long, her pediatricians are pleased with her development. I'm mostly

concerned right now about the fluid intake, especially with the weather getting

warmer. Any suggestions would be greatly appreciated.

Thanks,

Judy

[Guest guest]

Judy--

Eddie (7) has always been an oral eater but the path to increased

textures is a long one. It took until nearly 3 years old for him to

accept a spoonful of baby food without a bottle chaser. He slowly

worked his way up to soft foods, even pieces of chicken & whole beans

but would not do crunchy at all. He's now regressed back to oatmeal

textures, due to much-too-frequent vomiting for most of 2006 (improved

only by an elimination diet and minimal texture). He doesn't even

remember what to do with a piece of banana, when he used to hold on and

take a big bite. Baby steps.

> Hi everyone,

> I haven't posted in quite a while, but I do try and stay on top of

> the posts. I have some questions regarding feeding. Raegan just turned

> two on May 15 and she is doing great, she can walk about 15-20 feet

> independently and she is talking and signing up a storm. Raegan has

> had a g-tube since birth and we have not had to use it since February

> 6! We have a swallow study scheduled for July and then we'll begin to

> discuss removing the tube. Right now she eats mainly baby food,

> yogurt, applesauce, pudding, basically anything pureed and we are

> working on increasing her texture, she can handle small chunks of

> banana and avocado. Also, she only drinks from the open nosy cup. She

> did not start eating until she was around 18 months, so I know this is

> great progress. I'm just curious, is this normal progression, or much

> slower and any ideas how to increase texture and her willingness to

> eat independently, like pick up finger foods. Also, she is teething

> right now and her fluid

> intake has decreased, do CHARGE kids tend to not drink as much? I

> know from reading that Eva no longer has her feeding tube, Crystal, if

> you don't mind, what's her daily feeding schedule like? BTW, she

> weighs 24 lbs 4 oz and is 32 5/8 " long, her pediatricians are pleased

> with her development. I'm mostly concerned right now about the fluid

> intake, especially with the weather getting warmer. Any suggestions

> would be greatly appreciated.

> Thanks,

> Judy

[Guest guest]

Hi, my daughter was tube fed since birth and had her tube

removed when she was 3. Her feeding sounds very similar to Raegan

and lived on custards, yoghurts, pureed fruit and veggies and

whenever she could get her hands on chocolate. It was a slow process

and she hated lumps in her food, she would gag, it was awful and I

didn't want her to have a bad experience of choking to put her off

food. But I found that she would only gag if it were pureed food or

smooth food with lumps in it. She would eat a bowl of spagetti with

her fingers and I just had to put up with the fact that she had to

enjoy her food even if meant that the food landed everywhere else but

inside her tummy! Drinking has always been a struggle, because it

doesn't come naturally to swallow, she only has little sips and

mainly through a straw or a sippy cup. If I don't insist on her

drinking, she just won't drink. The only thing she drinks is mango

juice and she will drink about 250mls a day, sometimes I can get her

to drink a little bit of milk, but only about 30mls. She can go the

whole day at school without drinking. Then I get as much as I can

into her after school. She eats mostly everything too, she just

can't eat meat, chicken and some tough or dry fish, she will chew it

but then has to spit it out. She is very healthy and she weighs

about 17kgs and is 5 years old.

Sydney, Australia

>

> Hi everyone,

> I haven't posted in quite a while, but I do try and stay on top

of the posts. I have some questions regarding feeding. Raegan just

turned two on May 15 and she is doing great, she can walk about 15-20

feet independently and she is talking and signing up a storm. Raegan

has had a g-tube since birth and we have not had to use it since

February 6! We have a swallow study scheduled for July and then we'll

begin to discuss removing the tube. Right now she eats mainly baby

food, yogurt, applesauce, pudding, basically anything pureed and we

are working on increasing her texture, she can handle small chunks of

banana and avocado. Also, she only drinks from the open nosy cup. She

did not start eating until she was around 18 months, so I know this

is great progress. I'm just curious, is this normal progression, or

much slower and any ideas how to increase texture and her willingness

to eat independently, like pick up finger foods. Also, she is

teething right now and her fluid

> intake has decreased, do CHARGE kids tend to not drink as much? I

know from reading that Eva no longer has her feeding tube, Crystal,

if you don't mind, what's her daily feeding schedule like? BTW, she

weighs 24 lbs 4 oz and is 32 5/8 " long, her pediatricians are pleased

with her development. I'm mostly concerned right now about the fluid

intake, especially with the weather getting warmer. Any suggestions

would be greatly appreciated.

> Thanks,

> Judy

>

>

>

[Guest guest]

Hi ,

At least there seems to light at the end of the feeding tunnel! I love hearing

about kids who are older and " have been there, done that " it really helps to not

feel so lost! Thanks for helping.

Judy

Begas angelabgs@...> wrote:

Hi, my daughter was tube fed since birth and had her tube

removed when she was 3. Her feeding sounds very similar to Raegan

and lived on custards, yoghurts, pureed fruit and veggies and

whenever she could get her hands on chocolate. It was a slow process

and she hated lumps in her food, she would gag, it was awful and I

didn't want her to have a bad experience of choking to put her off

food. But I found that she would only gag if it were pureed food or

smooth food with lumps in it. She would eat a bowl of spagetti with

her fingers and I just had to put up with the fact that she had to

enjoy her food even if meant that the food landed everywhere else but

inside her tummy! Drinking has always been a struggle, because it

doesn't come naturally to swallow, she only has little sips and

mainly through a straw or a sippy cup. If I don't insist on her

drinking, she just won't drink. The only thing she drinks is mango

juice and she will drink about 250mls a day, sometimes I can get her

to drink a little bit of milk, but only about 30mls. She can go the

whole day at school without drinking. Then I get as much as I can

into her after school. She eats mostly everything too, she just

can't eat meat, chicken and some tough or dry fish, she will chew it

but then has to spit it out. She is very healthy and she weighs

about 17kgs and is 5 years old.

Sydney, Australia

>

> Hi everyone,

> I haven't posted in quite a while, but I do try and stay on top

of the posts. I have some questions regarding feeding. Raegan just

turned two on May 15 and she is doing great, she can walk about 15-20

feet independently and she is talking and signing up a storm. Raegan

has had a g-tube since birth and we have not had to use it since

February 6! We have a swallow study scheduled for July and then we'll

begin to discuss removing the tube. Right now she eats mainly baby

food, yogurt, applesauce, pudding, basically anything pureed and we

are working on increasing her texture, she can handle small chunks of

banana and avocado. Also, she only drinks from the open nosy cup. She

did not start eating until she was around 18 months, so I know this

is great progress. I'm just curious, is this normal progression, or

much slower and any ideas how to increase texture and her willingness

to eat independently, like pick up finger foods. Also, she is

teething right now and her fluid

> intake has decreased, do CHARGE kids tend to not drink as much? I

know from reading that Eva no longer has her feeding tube, Crystal,

if you don't mind, what's her daily feeding schedule like? BTW, she

weighs 24 lbs 4 oz and is 32 5/8 " long, her pediatricians are pleased

with her development. I'm mostly concerned right now about the fluid

intake, especially with the weather getting warmer. Any suggestions

would be greatly appreciated.

> Thanks,

> Judy

>

>

>

[Guest guest]

Sounds like Raegan is doing absolutely fabulous! WOW! Walking by two years old

AND eating 100% orally is huge, huge, huge! Congratulations! And talking

and signing, yay!

Judith jacampski1@...> wrote:

Hi everyone,

I haven't posted in quite a while, but I do try and stay on top of the posts. I

have some questions regarding feeding. Raegan just turned two on May 15 and she

is doing great, she can walk about 15-20 feet independently and she is talking

and signing up a storm. Raegan has had a g-tube since birth and we have not had

to use it since February 6! We have a swallow study scheduled for July and then

we'll begin to discuss removing the tube. Right now she eats mainly baby food,

yogurt, applesauce, pudding, basically anything pureed and we are working on

increasing her texture, she can handle small chunks of banana and avocado. Also,

she only drinks from the open nosy cup. She did not start eating until she was

around 18 months, so I know this is great progress. I'm just curious, is this

normal progression, or much slower and any ideas how to increase texture and her

willingness to eat independently, like pick up finger foods. Also, she is

teething right now and her fluid

intake has decreased, do CHARGE kids tend to not drink as much? I know from

reading that Eva no longer has her feeding tube, Crystal, if you don't mind,

what's her daily feeding schedule like? BTW, she weighs 24 lbs 4 oz and is 32

5/8 " long, her pediatricians are pleased with her development. I'm mostly

concerned right now about the fluid intake, especially with the weather getting

warmer. Any suggestions would be greatly appreciated.

Thanks,

Judy

[Guest guest]

Judith,

Eva is also still just on baby food. I do try like small meats and I

also tried these gerber potato things. BUT she doesnt like anything

to chuncky she spits it all out. AS for her fluid intake she is

still talking pediasure and the best way to get her to drink it is

putting her in her crib for some reason that is the only place she

drinks well because I think she gets distracted on the floor and for

her to try and sit in a chair and drink takes to long or she drops

it because she cant hold it so well. She takes about 4 8oz bottles a

day and I am going to be working on juices this summer and my one

idea is making real juice popcicles for her to play with outside

also.

That is so great Raegan is walking and talking, we have not got that

out of Eva yet. One thing I learned tho is not to be discourged

about what other CHARGErs around her age are doing because your is

doing something they might not be doing yet.

Sounds like Everything is doing great!!

Hugs,

Crystal and Eva (2 year old CHARGEr)

> Hi everyone,

> I haven't posted in quite a while, but I do try and stay on top of

the posts. I have some questions regarding feeding. Raegan just

turned two on May 15 and she is doing great, she can walk about 15-

20 feet independently and she is talking and signing up a storm.

Raegan has had a g-tube since birth and we have not had to use it

since February 6! We have a swallow study scheduled for July and

then we'll begin to discuss removing the tube. Right now she eats

mainly baby food, yogurt, applesauce, pudding, basically anything

pureed and we are working on increasing her texture, she can handle

small chunks of banana and avocado. Also, she only drinks from the

open nosy cup. She did not start eating until she was around 18

months, so I know this is great progress. I'm just curious, is this

normal progression, or much slower and any ideas how to increase

texture and her willingness to eat independently, like pick up

finger foods. Also, she is teething right now and her fluid

> intake has decreased, do CHARGE kids tend to not drink as much? I

know from reading that Eva no longer has her feeding tube, Crystal,

if you don't mind, what's her daily feeding schedule like? BTW, she

weighs 24 lbs 4 oz and is 32 5/8 " long, her pediatricians are

pleased with her development. I'm mostly concerned right now about

the fluid intake, especially with the weather getting warmer. Any

suggestions would be greatly appreciated.

> Thanks,

> Judy

>

>

[Guest guest]

Crystal,

Sounds like Raegan and Eva are enjoying the same foods these days. We starting

putting Tofu pieces into her foods for added texture and she's doing well with

that, the tofu encourages her to chew without working so hard. Raegan is

drinking Just For Kids French Vanilla, it's 1.5 calorie per ml, she drinks

about 8 - 10 ounces daily and water and juice also, around 5 ounces daily.

Raegan can't drink from a bottle or anything that requires her to suck, she does

great with any open cup. Does Eva have a feeding therapist? I'd love to be able

to share feeding experiences! When looking at Raegan's development, feeding

seems to be our biggest challenge these days and I haven't found anyone in our

area with quite the same feeding issues. Thanks for your help, I really

appreciate it.

Judy

supermama95 supermama95@...> wrote:

Judith,

Eva is also still just on baby food. I do try like small meats and I

also tried these gerber potato things. BUT she doesnt like anything

to chuncky she spits it all out. AS for her fluid intake she is

still talking pediasure and the best way to get her to drink it is

putting her in her crib for some reason that is the only place she

drinks well because I think she gets distracted on the floor and for

her to try and sit in a chair and drink takes to long or she drops

it because she cant hold it so well. She takes about 4 8oz bottles a

day and I am going to be working on juices this summer and my one

idea is making real juice popcicles for her to play with outside

also.

That is so great Raegan is walking and talking, we have not got that

out of Eva yet. One thing I learned tho is not to be discourged

about what other CHARGErs around her age are doing because your is

doing something they might not be doing yet.

Sounds like Everything is doing great!!

Hugs,

Crystal and Eva (2 year old CHARGEr)

> Hi everyone,

> I haven't posted in quite a while, but I do try and stay on top of

the posts. I have some questions regarding feeding. Raegan just

turned two on May 15 and she is doing great, she can walk about 15-

20 feet independently and she is talking and signing up a storm.

Raegan has had a g-tube since birth and we have not had to use it

since February 6! We have a swallow study scheduled for July and

then we'll begin to discuss removing the tube. Right now she eats

mainly baby food, yogurt, applesauce, pudding, basically anything

pureed and we are working on increasing her texture, she can handle

small chunks of banana and avocado. Also, she only drinks from the

open nosy cup. She did not start eating until she was around 18

months, so I know this is great progress. I'm just curious, is this

normal progression, or much slower and any ideas how to increase

texture and her willingness to eat independently, like pick up

finger foods. Also, she is teething right now and her fluid

> intake has decreased, do CHARGE kids tend to not drink as much? I

know from reading that Eva no longer has her feeding tube, Crystal,

if you don't mind, what's her daily feeding schedule like? BTW, she

weighs 24 lbs 4 oz and is 32 5/8 " long, her pediatricians are

pleased with her development. I'm mostly concerned right now about

the fluid intake, especially with the weather getting warmer. Any

suggestions would be greatly appreciated.

> Thanks,

> Judy

>

>

[Guest guest]

Judith,

Eva does have a feeding therapist but we lost her for about a month

over insurance issues and now she is leaving again for 2 months

because she is about to have a baby. I would get a replacement but

she doesnt do anything I couldnt do myself.

We are also trying to get her into the feeding clinic at Childrens

because Eva's biggest problem is chewing. Her therapist thought it

was a good idea.

If you ever want to email me its the same as my screen name at

yahoo.

Have a great weekend!!

Crystal and Eva

> > Hi everyone,

> > I haven't posted in quite a while, but I do try and stay on top

of

> the posts. I have some questions regarding feeding. Raegan just

> turned two on May 15 and she is doing great, she can walk about 15-

> 20 feet independently and she is talking and signing up a storm.

> Raegan has had a g-tube since birth and we have not had to use it

> since February 6! We have a swallow study scheduled for July and

> then we'll begin to discuss removing the tube. Right now she eats

> mainly baby food, yogurt, applesauce, pudding, basically anything

> pureed and we are working on increasing her texture, she can

handle

> small chunks of banana and avocado. Also, she only drinks from the

> open nosy cup. She did not start eating until she was around 18

> months, so I know this is great progress. I'm just curious, is

this

> normal progression, or much slower and any ideas how to increase

> texture and her willingness to eat independently, like pick up

> finger foods. Also, she is teething right now and her fluid

> > intake has decreased, do CHARGE kids tend to not drink as much?

I

> know from reading that Eva no longer has her feeding tube,

Crystal,

> if you don't mind, what's her daily feeding schedule like? BTW,

she

> weighs 24 lbs 4 oz and is 32 5/8 " long, her pediatricians are

> pleased with her development. I'm mostly concerned right now about

> the fluid intake, especially with the weather getting warmer. Any

> suggestions would be greatly appreciated.

> > Thanks,

> > Judy

> >

> >