Re: Re: Fetal diagnosis

[Guest guest]

,

I don't mind your questions at all. I know exactly what you are going

through as I was so fearful of the unknown as well. I loved being pregnant,

but the emotional stress was so difficult. However, Dr. Wilner provided

some answers and some piece of mind for me. Nothing was for sure and she

never said specifically RSS, but she was pretty sure it was not

achodoplasia, but another growth disorder. Anyway, I think one of the best

things I did was wait until Jonah was full term, 38 weeks to deliver and eat

a lot and well. Since he was safe and would not do better outside the womb,

it made more sense to let him grow as much as possible so we did not have to

worry about preemie issues. Anyway, to answer some of your questions. My

son is only 21/2 so I can't everything and have many of the same concerns as

you, but although it is different and challenging handling some of the

issues related to RSS, there is normalcy and yes, Jonah has an enormous

amount of energy. I hope this helps and let me know if I can help with

anything else.

All the best,

Re: Fetal diagnosis

> Thank you and Jodi for the doctor recommendations, and

> to everyone who responded to my post. Your advice is

> appreciated more than you know.

>

> I think it is the fear of the unknown that is the most difficult

> thing

> to deal with. Knowing something will be wrong with your baby,

> but not knowing what it is, or what to expect.

>

> I know this is a forward and ignorant question, but I'm going to

> just jump in and ask it. I hope you'll understand the reason

> behind my asking it .

>

> I have read so many stories about the challenges faced by

> parents of children with RSS, skeletal dysplasias and growth

> issues in general. But I would love to know about your children

> themselves. Do RSS kids have energy, can they keep up with the

> level of play of other kids, are they quite fragile? Do RSS children

> typically attend regular schools? My child will be an only child, no

> sibs or even cousins; inotherwords, no built-in support network. I

> am so concerned about her having friends. Are other kids

> generally accepting? Aside from all the struggles you go through

> together, is there a degree of normalcy in your lives?

>

> Again, I apologize for my ignorance, and I truly hope I am not

> offending anyone with my questions. I just want to prepare

> myself and get a well-rounded picture of the " norm " rather than

> simply focus on the negatives.

>

>

>

>

>

>

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>

[Guest guest]

Hi and welcome to the list My son Keigan was born 4-15-03 and was diagnosed

in Aug. 03'. He was 12 1/2 Lbs at our last Doc visit which was almost a month

ago. From what I have seen and read on this list, the severity of the symptoms

vary greatly from person to person. Keigan has the weight and height issues but

no problems in the eating department.

Keigan has a ton of energy and is keeping up great with his brother who is

almost 3. As for fragile, thankfully mine is not. He has figured up how to

pull up on furniture and " cruise " so he has regular bruises from falling and

trying again. Keigan is not school age yet but we are working with people from

the school such as a physical therapist who comes to our home and works with

him.

As for normalcy, we have plenty of that. The only time I really see that he is

" different " is when we see another kid around the same age. Then it hits home.

Now that he is getting older people in public are noticing more. We had a lady

at the zoo the other day say " OH how cute! He is about 5 months old right? "

Hubby and I got a laugh out of that. Like I said, we forget how small he is

compared to other kids.

I think you came to the right place. This is a great bunch of people full of

good info. Good luck on your pregnancy and enjoy it!

Mommy to Keigan 4-15-03 (RSS) and Tristian 9-26-01