Re: G-tube feedings to Oral

February 27, 2002

Stacie,

I don't have great advice to give. I'm still too much in the thick

of it all. So, I don't have the perspective that Jodi has yet.

Does your son have appropriate oral skills to achieve your goal?

Does he have the oral-motor ability and the stamina to eat the

necessary calories?

I can tell you our road has been incredibly slow and tedious. But

once we were hooked up with an appropriate feeding therapist, it was

always a forward-moving process. We are still using the tube for

40% of nutrition....yet our endo is complaining that I am not pushing

enough calories for adequate weight gain.

Trying to balance increased oral intake with the needs of a RSS child

is very hard.

I am told that the type of weaning you describe is almost always

accompanied by weight loss. That is hard to endure for those of us

who work so hard for each ounce our child gains. Our approach has

been more similar to Jodi's. For the stage we are currently at, I

present food, note approx. calories and then make up for the deficit

with the tube. There is no science to it....you do what works for

you and your child.

My only words of comfort are that you are not alone. There are many

of us who are going through similar struggles within the privacy of

our own homes. I try to remind myself that all of this is a

process....For me,that takes the pressure off of any single meal and

instead focuses on improvement over time. Three years ago, nothing

passed my daughter's lips except her own fingers. Today she ate 1/4

cup of black eyed peas, 1/5 peanut butter sandwich and 4 ounces of

carnation instant breakfast for lunch. It still requires cueing on

my part, but less and less.

I don't think I've given you anything very helpful here...but I can

tell you I share in the frustration, fear, and tedium...

Hang in there,

Irene

Mom to , 5, 30#, 39 "

February 27, 2002

Stacie,

I don't have great advice to give. I'm still too much in the thick

of it all. So, I don't have the perspective that Jodi has yet.

Does your son have appropriate oral skills to achieve your goal?

Does he have the oral-motor ability and the stamina to eat the

necessary calories?

I can tell you our road has been incredibly slow and tedious. But

once we were hooked up with an appropriate feeding therapist, it was

always a forward-moving process. We are still using the tube for

40% of nutrition....yet our endo is complaining that I am not pushing

enough calories for adequate weight gain.

Trying to balance increased oral intake with the needs of a RSS child

is very hard.

I am told that the type of weaning you describe is almost always

accompanied by weight loss. That is hard to endure for those of us

who work so hard for each ounce our child gains. Our approach has

been more similar to Jodi's. For the stage we are currently at, I

present food, note approx. calories and then make up for the deficit

with the tube. There is no science to it....you do what works for

you and your child.

My only words of comfort are that you are not alone. There are many

of us who are going through similar struggles within the privacy of

our own homes. I try to remind myself that all of this is a

process....For me,that takes the pressure off of any single meal and

instead focuses on improvement over time. Three years ago, nothing

passed my daughter's lips except her own fingers. Today she ate 1/4

cup of black eyed peas, 1/5 peanut butter sandwich and 4 ounces of

carnation instant breakfast for lunch. It still requires cueing on

my part, but less and less.

I don't think I've given you anything very helpful here...but I can

tell you I share in the frustration, fear, and tedium...

Hang in there,

Irene

Mom to , 5, 30#, 39 "

February 28, 2002

Dear Stacie ,

I'm sorry you are having such a rough time with this. Like Irene I

can;t really offer any magic solutions - but just wanted to let you

know that you are not alone!

Tonight Finlay ate 1 noodle for dinner - last night it was 2 baked

beans!!!!

Its very hard to balance the tube feeds wiht the oral feeds to ensure

they are getting enough calories but are still hungry for meals! -

Especially when these are kids that don't seem to have normal

appetite patterns anyway!

Our dietician has worked out for us how many calories Finlay needs to

gain weight per day - its works out to be 1100mls of pediasure -

assuming that is all he consumes. So at least I know that if he eats

nothing else he will still gain weight provided I give him enough

pediasure by bolus and overnight feeds. He has lost a little bit of

weight in the last 2 weeks as I was cutting back on feeds to try and

encourage him to eat more orally....its a long road and some days it

seems to be all uphill - but it was lovely to hear Jodi's experiences

with Max - its nice to know someone has been where we are and has

come through the other end!!!

Anyway you are doing a great job so hang in there and know that there

are lots of us out there going through it with you!

in new Zealand

mum to Finlay aged 2 and a bit!! g-tube 80cms and 9.3kgs

February 28, 2002