Questions and update on Pernille in Norway

[Guest guest]

Hi e1.

Sorry i havent been around for a long time. Things is taking so long. We finally

got an

apponintment to go to Sweden to se a doc there. At Dronning Silvias childrens

hospital.

We are going over there before christmas. We are going to talk about growth

hormones.

Pernilles doctor knows to little and want them to say s or no. Do any of you

have any

thoughts about using growth hormones?

We are coming to USA on the 15 of may 2006. We are going to Orlando and staying

for

almos 3 weeks. It would be so much fun if we could meed anyone of you. We have

no

contact with anyone with RSS in Norway. I dont have full control of where e1

lives. Hope

we can arrange a meeting. We are going to travel some so we can drive to you if

it is not

tooooo far...........lol

Pernille is doing ok. She has gotten a spesial trainer in kider garden. We are

using signs so

she is not to frustrated. She has problem pronaunsing words. She is getting

taller, it just

isnt going in fast speed. She is now 3 yers, her weight is 10,5 kilos and she is

84 cm.

We have problems with pants. Do anyone of you know any brands of clothing that

fits little

girls who does not use dipers and are skinny. All of her pants are falling

of......Pls let me

know, I can order online.

Love Stine mom to Kristoffer 5 and Pernille 3 with Silver Russel syndrome