[tri-med] Re: Anyone have any insight or advice???


----- Original Message -----
From: "Cindy Polson" <cindyrella4171@xxxxxxxxxxx>
> Aside from the PDA, slight strabismus, and hearing deficit she doesn't
seem
> to have any other physical abnormalities.  Which I'm thankful for, but
also
> befuddled by!  If she has such minor physical problems why isn't she doing
> as well developmentally as some of your children who are full T18 and who
> have much worse problems???

Sorry to say, there doesn't seem to be any rhyme or reason Cindy. Each of
our children is an individual and acts as such. It's also something the drs
tend to forget when lumping them all into the "incompatible with life"
catagory that most of our rare triers are.

>Yesterday I went so far as to
> go into the attic to get Christmas lights to put on her crib because I
> thought it would be visually stimulating for her...

I used to do some really funky things with Alex for stimulation. One time I
put his bare feet into a pot of dry beans so he could kick and roll them
around with his feet.

>Am I expecting too much too soon?

Hope following the loss of dreams is tough on the acutal expectations in my
experience.

Alex didn't roll over until he was almost one. He didn't crawl until 17
months. He didn't walk until 20 months.
Just keep on working with Meredith to give her the best shot possible for
achieving what she's able to do.

 > I guess what I really want to ask everyone is was your child a big ol'
lump
> up to a certain age and then just started to blossom?

Alex was like that. He was a lump for sure and then one day WHAMO there he
went. Every now and then he'd plateau and I'd think "well, he's done what he
can now" and then after a while WHAMO again and he'd gon on a spurt of
developemental achievements. It went on that way for years.

>I mean Meredith is 14
> months old and her developmental assesment said she was 2-3 months so does
> that mean that when she's 28 months she'll be 4-6 months and at 42 months
> she'll be 6-9 months or do they get to a certain age and kind of have a
> developmental spurt?

No, it doesn't follow that the rate will stay the same. It MIGHT but it's
not written in stone. Meredith will follow her own pace.

Michelle mom to Alex (14, partial trisomy 14 mosaic) and Molly (10)
MichiganUSA

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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