question for Gaby

[Guest guest]

Hi Stella.

Thank you for your respond. Your Gaby sounds very much like my

Pernille. Pernille turns 2 on the 9. of october this year.

Can i ask you some questions? When did you get the diagnosis for

Gaby? What was it that made the doctors say it was RSS? How much did

she weight at birth? What is Occuptional therapy? What is a

nutriotist? When did she start walking? Has she gotten all her

teeth? Does she eat a lot, Pernille does....But we dont know where

it goes(the food, its not staying on her body).....lol..... she is

always the last to finish a meal, and we are all sitting waiting for

her to finish.....

Good luck on the potty training, maybe i shoud introduse the potty

for Pernille aswell? I think I will......

Thank you for your nice words. Its so good to talk to someone who

are in our shoes. Its so frustrating to hear : " oh, but she looks so

well and happy, there is nothing wrong with her " And my same

respons: we know there is something wrong and so do the doctors

say...

Wrong is maybe a wrong translation, but cant find a better

word....lol

Stine mom to Kristoffer 4 and Pernille soon 2

> > Hi, I am a mom to a little girl named Pernille and we live in

> > Norway. we call it silver-russel over here. The doctors at our

> > hospital have after over a year finally come with a name of what

> > they think is wrong with my doughter. The problem here is that

> noone

> > has ever heard about this. And i found this site and so happy

that

> I

> > am not alone.

> >

> > I feel a little alone in this....... and wondered it anyone has

> > experienced anything that we have.

> >

> > Pernille eats well but is not gaining much waight. She turnes 2

in

> > october and is only 74 cm and 7,8 kilos. i have a feeling that

> > everyone has problems with eating and keeping the food down,

> > reflux.... is this so?

> >

> > The 11 of august we are going to the hospital to do the bone x-

> ray,

> > take a sample of the spinalfluid, musclebiopsy, MR of her head.

> >

> > We have alredy done hormontest and are waiting for a new in

> > september. She has low blood suger. She was small at birth, only

> 44

> > cm and 2,5 kilos, she was fullborned.

> >

> > Sorry my language, its alot of hard words to translate.

> >

> > Hope anyone are in my shoes.

> >

> > Love Stine mom of Kristoffer 4 years and Pernille soon 2 years.