Abby lost weight...ugh!!!!

October 18, 2005

The frustration level is overflowing right now. Abby lost one pound

over the last month. She is being tube fed along with eating

normally and we lose weight. Ugh!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Now

we have a new plan of action: 1)More tube feedings through the day-

5; 2)tube feedings at night 1 or 2, not a pump because we tried that

and she failed miserably with it-I will be up doing them; 3)Abby

still wears a pullup at night-now I am to wake her up every two

hours at night to take her to the bathroom; 4) Continue with the

growth hormones.

I am about to go out of my mind. I have a 3 month old baby that is

still eating through the night. The baby will not take a bottle

only mommy, lucky me. What sleep I was getting before today just

got diminished down to nothing. The tube feedings I am only able to

do. Daddy did it twice and did not pay attention to what he was

doing (he was watching sports on tv) and she got a lot of air in her

belly. Abby has since fired daddy from tube feedings. Daddy is in

charge of shots only.

Abby is in pre-K three days a week from 8:30-1:30p. She is to eat

lunch at school, but now we are pulling her out before lunch to get

in the tube feedings. She does not want to be fed at school yet.

She knows as she gets older that will have to happen.

Sorry to vent so much. Abby was doing well with growing and today

was a big blow. She weighs 24.3 pounds and is 36 inches tall. She

is getting teased at school already. I wish there was a magic

potion I could make and everything would be better but there is

not. Luckily I can vent to you all and you understand. I am trying

to be the support person for others who live close to us that have

children with RSS, but right now I am falling apart. There is not a

single person we associate with that understands. However, they all

want to help but they do not know what to help with and honestly I

do not either.

Thanks for listening!! I did post new pictures of Abby yesterday.

Amy (mom to Abby-RSS, Tyler-nonRSS, and -nonRSS)

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