eating issues and tube feeding.

[Guest guest]

Hi everyone,I keep reading everyones messages and am slowly getting

more familiar with everyone names and where you are all up to.Sorry if

I only ask questions at this point. I hope when we get as far as you

lot we will be able to contribute more. I am pleased to see other new

people asking and sharing there experiences. I would like to involve

us with everyones tips and advise on eating issues. Reading about all

the children not eating,refusing to eat and then eating, being

sick,not liking food near them etc, etc, etc has amazed me. It is as

if someone is talking about Lily. I really feel for the lady who is

the grandmother of a little girl.(sorry forgot your names at the

moment) We are so stressed and frustrated too>Our Lily will not

eat,she will have a few mouthfulls then refuse.Here is what we do......

..I syringe feed her milk with calorie powder in it called polycose,

and marvel milk powder and calogen calorie liquid at about 9pm. Then

i do the same at 11pm. it is usually 4oz in total but that is a pprox

200cals.

she has a spoon in each hand at every meal time and I basically let

her make as much mess as she wants. We sing and cheer at every

mouthfull and she likes that(sometimes).If she will not eat I leave

her then come back to it. Today I was tearfull when my husband came

home from work because she was stressed and wouldnt aeat her tea.there

was food everywhere. He bathed her whilst I cleaned up then she just

sat there at bedtime at let Joe our 4 year old son feed her and it was

the most she had eaten in days,it was amazing.She was so eager to take

food from him.

Lily has an appointment on friday with and endocrinologist. Can

anyone tell us what to expect for him.What do we need to ask him. We

think Lily needs tube feeding. Is an endo involved with this or will

he refer us on to some one else. Jayne mum to lily 13lb 12oz 66cms