[tri-med] Re: Mosaic trisomy 18

Welcome to the list, Tatenda. I'm mostly in lurk these days, but  
recently jumped back on with the sad news that our daughter Keren  
(T18) passed away. Keren lived almost 6 1/2 years, and thrived in  
many ways. We were so proud of her strides and improvements, but  
mostly her squeals, smiles and hugs. Those topped any of the  
accomplishments lists. She taught us SO much about unconditional  
love! I hope that is what you are enjoying with Shami!
Keren always had a little bit of scoliosis, and more pronounced  
kyphosis as she got older. I think she was three when we got her  
first back brace through an orthopedic doctor. It helped her a lot  
with sitting and breathing, and we knew it would help her as she grew  
(and she grew a LOT!). The brace was at times a pain--one more piece  
of equipment--but the benefits definitely outweighed the  
inconvenience. And we got to be experts at getting it on and off  
quickly!

I hope to hear more about Shami!

Loren (wife to Kraig, mom to Keren Elyse, T18, 9/27/02~1/28/09),  
Clarissa Joanne (7/17/05), Evelyn Ruth (4/26/07), and baby due (EDD  
8/6/09)
Southeast Michigan
http://webpages.eng.wayne.edu/~ad6075
http://picasaweb.google.com/LorenWarn

?You God formed my inward parts; you knitted me together in my  
mother. I praise you, for I was fearfully and wonderfully made.  
Wonderful are your works; my soul knows it very well. My Trisomy body  
was not hidden from you when I was being made in secret, intricately  
woven together. Your eyes saw me as I was. In your book were written  
every one of those details. You knew every day that was made for me  
even when there was not yet one of them.? (Psalm 139:13-16,  
paraphrased by my Dad when Keren died)

On Feb 9, 2009, at 10:15 AM, tate guzuzu wrote:

> hello,
>
> i just recently joined, i have been a lurker on the list and just  
> trying to get to  know how it works. I have a 2 and a half year old  
> with mosaic trisomy 18 and would like to get in touch with other  
> parents/caregivers who have children with the same condition maybe  
> learn a few ways to help my baby more. She has some devlopmental  
> delay, she doesnt talk, walk and is just starting to sit on her  
> own, and recently just found out she has a curve in her spine too.  
> i guess i am looking for someone who understands what i am going  
> through and get a couple of tips
>
> thanks
>
> tatenda
> mom to Shami (2 yrs) mosaic trisomy 18
>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>


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

Other related posts: