a feeding tube delima

[Guest guest]

I am Tolbert from Georgia and Maddison is my 4yr old

daughter with RSS. I don't post or read much anymore, we kind of

just live our life as best we can and eat as much as possible and

not focus on the RSS so much. We have always been lucky and not had

a feeding tube but she started pre k this august and has been sick a

couple of times and keeps loosing and gaining about 2lbs. And to us

that is a lot. She is 4 1/2 and weight 24lbs and is on gh and is 38

inches tall. I feel now that we probably should have had a feeding

tube a long time ago and it would have been easier is the long run.

The doctor has always tried to stay away from it also. But now that

winter is soon to come and she is always so tired from school and

will probably getting sick a lot more that we have been in about a

year and a half I am wondering if at what point you decide if she

needs one and how it may hurt or help things. Also I don't know

much about them except there a different kinds and how do you decide

which kind. Would doing it this late be a wrong decision or make

things worse. I look back and think maybe it would have been better

a couple of years abo because we wouldn't have to be on her

constantly about food. It makes me feel awful that it seems that is

all we do is focus on food and cant'enjoy her or let her enjoy being

a kid, or she is to tired to enjoy things the way she could. Do

they do them for just supplemental feeding at night? I need any

advice available and be honest. Her gastro doesn't have another RSS

patient except for one, I think. And also I am so affraid of her

getting an infection of some kind from surg or whatever.

HELP

Tolbert (sissak for short)

mother of Maddison 4 1/2 RSS 24lbs 38 inches tall