Awaiting a dignoises with many questions

[Guest guest]

Hello all,

I a mom of 6 children, and the last two were twins, they were born in

March of 08. We are currently waiting for out doctors to receive

information from doctors at Ceder Siani. The waiting is really

starting to make me wonder if were ever going to get a dignoises. We

have been waiting for almost two months and still nothing. My little

ones were born with Neonatal Graves disease(which is an autoimmune

disorder that affects the thyroid). I'm wondering if that doesn't

have something to do with our Ava's growth. She looks like she is

perportioned equally, but has a few things that make the Genetics doc

think that she is a little person. Such as hydrochephalus, and a

perdominate forhead. She also seems to have very small hands and

feet, but they seem to fit her small body. She was also born two

months early, so even for a child with an adjusted age of 7 months

she is still small. She is wearing 0-3month old clothes. Her twin

sister is only one size bigger though. I don't know I just wished

the waiting would end. The dignoises isn't what makes this hard, as

I love her no matter what, but what does make it hard is that we just

don't know what we need to be doing for her. I mean what other

medical conditions should we be aware of? Guess we'll know more when

the doctors tell us right? How on Earth can all of you sit and wait

for a dignoises without pulling your hair out? Oh and we have

already had a blood test for Achondroplasia, which came back

negative. We did do x-rays, and have them sent to the doctors. How

long have some of ya'll waited for an officail dignoises? If any of

you have children, how did you tell them about it when they were old

enough to understand? Can any of you tell me when you realized you

weren't like the other people? Did it make you feel differently

about things? So many questions keep coming to mind, I can't even

understand what she may be facing and how she will deal with them.

Do you think it's harder to be a little person than an avearage size

person? Is there anything you would change about the way your

medical condition was taken care of?

Mind all of you, I don't mean to be offenceive, I just don't know who

to ask, and what to really ask. If anyone wants to give me pointers

I'm up for that, I have no clue how were going to handle any of

this. My husband and I have said that our little Ava is going to

grow up in a land of giants(as my husband is 6ft 5, and I am 5ft 9).

That must really make it hard not to be intimadating. Should we

sqwat when we speak to her? I don't know.....anyway rambling on.

Thanks in advance,

Valarie