DNA UPD test is back

[Guest guest]

HI Gang,

Well, the test results are in and Natasha's genetist called right away....

Just as suspected,,, Negative. Nada, Nope, Nothing.

So, it is sorta a disapointment, but not surprising. He says she may have

some variant of RSS, but only time will tell. He also said he has no way of

predicting anything about her hieght at this time. She may be very small.

He also says there are cases where children have growth spurts very late. It

is so hard not to know. I still feel like it is somehting,, but it is time

to let it go and get on with life.

There are some things going on with Natasha's development which are not good,

but not surprising. She is rather traumatized from all the hospitalizations,

tests and docotrs. She has regressed in many areas,,, esp socially and

emotionally.

Many of you already know we have been in the process of checking out the

school district to get Natasha a IEP and well, based on her medical reports

that I sent they have concluded that Natasha qualifies for special education

and full services to what ever she may need. We are checking out a few

schools and also having a IEP done in 2 weeks. They are moving fast. They

are getting it done in 30 rather than 50 days. Natasha was evaluated and she

is behind in some areas and does well in others. We are scared if we dont

act now and place lots of atttention on her early education,,, by the time

she gets to school she will be signficantly behind. So we hope we like the

school that has been recomended. The ratio will be so great. Enrollment is

8 children. THere is 1 teacher, 1 aid and a nurse... Also there are floating

Pt/Ot and whatever else the kids need.

On another note. Anyone out there have stamina issues? Specifically what do

you do about long jaunts at the Mall or trips to the Zoo or long days at

amusement parks? Natasha's stroller just broke after 4 1/2 years. Do we buy

her another one? She is not stong enough to jsut stroll the mall or anything

else really long like that. She tires easily and frankly we cannot carry her

anymore. I just do not konw what to do. My friend who is a Parent

coordinator for Little People of America says do not buy a new stoller. But

I just do not think she is strong enough to go without one yet. And we are

not sure when she will be. I asked this of her genetist and he said it is

problematic... go ask a physical therpaist/occupational therapist at

Natasha's new school. Input needed.

Well, hope I have not put anyone to sleep. Thanks for all being here.

XOXO hugs,

Ann- Mom to Natasha,,, short stature,,, looks like she may or may not have

RSS... Short stature 4 1/2 years old, 28 pounds and 35.5 inches.