Blog Archive 12/2008

Someone my own size…

December 31, 2008 by Bill Strong

Gwendolyn just lights up when her cousin Henry (19 months old) touches and interacts with her. It is really cute to watch. She loves it.

The Mission at sunset

December 30, 2008 by Bill Strong

Family, an 18th century Spanish Mission, a sunset, wine, cheese...what else could you ask for? A football game? -- we had one of those as well

I loved this picture -- just the girls.

FSMA Releases Newly Diagnosed SMA1 Care Booklet

December 29, 2008 by Bill Strong

Last week, Families of SMA (FSMA) released a new booklet aimed at providing parents and/or caregivers of newly diagnosed SMA Type 1 infants with help in deciding respiratory care options. In our experience with Gwendolyn, dealing with the reality of the diagnosis was difficult enough, but the lack...

Six Degrees of Separation

December 29, 2008 by Victoria

This Christmas, all over English railway stations, the heavyweight boxing champion, Frank Bruno, is featured in an ad to raise awareness about Spinal Muscular Atrophy. As a young boy growing up in London, my dad took up boxing. As luck would have it, his trainer was George Francis, who would later...

Santa Barbara City Fire Station #3

December 28, 2008 by Bill Strong

Victoria's sister, Elizabeth, her husband, Chad, and our adorable
nephews, William (5 years old) and Henry (18 months old) arrived for a
visit last night from Philadelphia. We absolutely love spending time
with all of them and we are so happy that they are here with us
through the New Year.

Today we...

Another new friend…

December 27, 2008 by Bill Strong

Gwendolyn snuggling in one of her new pair of adorable pajamas
listening attentively to her new friend, Teddy Ruxpin. Yes, Teddy
lives on and he, his friends, and their adventures haven't changed in
20 years -- well, except for the digital cassette cartridge he uses
instead of the ancient tape...

Friends…

December 27, 2008 by Bill Strong

I think they've become acquainted quite nicely

Gwendolyn loves her baby!!!

Christmas Thoughts for Others

December 26, 2008 by Victoria

This was Gwendolyn with Santa last year on Christmas day while we were in the hospital. And while we are proud our daughter was in the News-Press, we so wish it were under different circumstances. And so our prayers are especially with those who are in the hospital watching their children fight...

My Christmas…

December 25, 2008 by Victoria

Hi, this is Gwendolyn. I love Christmas!!! I have had so much fun over the last few weeks, but today was extra special!

First, on Christmas Eve we went to church, sang many special Christmas songs, and I waved to the children dressed as shepherds and angels...

Then we came home and started getting...

An Honest Christmas

December 24, 2008 by Victoria

This isn't exactly a jolly Christmas post, but one of the things we promised at the beginning of this was to be completely honest. The second thing we promised was to live as fully and presently as possible with Gwendolyn. And while sometimes living completely honestly and being fully in the...