>
> [hi , i am a proud grandmother of a little boy who has recently been
> diagnosed with trisomy 18 mosiac 60%.]
>
> Hello! It's nice to see another grandmother on the list. My granddaughter,
> who has full T-18, just celebrated her first birthday. Although she is on
> oxygen because she has a heart problem, and feeds using an NG tube (although
> she will take some food by mouth now), she's had no health crises during her
> first year and is doing wonderfully. She was a normal birth weight (6 lbs.,
> 5 oz.) and is now 14 lbs., so her growth could be considered a bit slower
> than non-T-18 babies. Her development is probably at a 6 mos. level. She
> smiles and laughs (showing all her 4 teeth!), can put her fist up to her
> mouth, can almost roll over, can sit up for a few minutes when placed in
> that position, pulls her aunt's hair (my youngest daughter), and can hold
> onto and shake rattles and toys. She wears glasses because she's farsighted
> and has to have her eye patched because she's somewhat cross-eyed.
>
> Her mother works with her every day on physical therapy and developmental
> things. The state sends a physical therapist and someone else who deals with
> developmental stuff (can't remember what that person is called). Her
> prognosis when she left the hospital after three weeks in the NICU wasn't
> all that great, according to doctors. Luckily, doctors can be wrong, and the
> grim prognosis was not accurate in my granddaughter's case. Every T-18 child
> is different, with different health problems, and responses to those health
> problems. I hope that your grandson will be as lucky as my granddaughter,
> and will continue to give you joy for many years.
>
>
> Building ___ooOOoo__ Rainbows
> www.trisomyonline.org
> Families Helping Families On-line
>
>
>
> Building ___ooOOoo__ Rainbows
> www.trisomyonline.org
> Families Helping Families On-line
>
Hi Sheila thanks for your letter it was lovely reading it, it has given me hope
that there is help out there &it cheered me up as I was feeling a bit down. At
the moment it feels like our world has been shattered &were trying to keep it
as normal as possible as my daughter has 2 other children that are disabled but
not with Trisomy 18 &she thought it was her but the genetics said it has
nothing to do with her.
Anyway Sheila thank you once again write to you soon.
Jackie
Building ___ooOOoo__ Rainbows
www.trisomyonline.org
Families Helping Families On-line