Posts tagged with: Featured
She's obsessed. Totally and completely obsessed with the Wizard of Oz. What happened to my little baby? How do I have a child big enough to be fully captivated by a film made in 1939? I know, I know -- it's a classic. But never in a million years did I think my Little Miss Particular would not...Read More >>
In our experience, power and backup power for Gwendolyn's various life-critical machines can be -- well -- a pain in the neck and, when we haven't been prepared, extremely stressful and dangerous. We feel like we've encountered (or stumbled through) just about every power issue and emergency you...Read More >>
My Favorite Things With My Daddy
By Gwendolyn Strong, age 3 1/2 (translation assistance by Mommy)
My favorite things to do with my Daddy are
swinging on the swings
going on walks
reading books together
I love my Daddy.
Happy Father's Day to the best father in the entire universe!Read More >>
Having a hard time.
I don't know if it is the June gloom or if being in the hospital has messed with my mood, but I'm in a funk. And it's a low one. The reality of SMA is weighing heavily on my chest like a load of bricks and I'm having trouble catching my breath.
For such a long time we've...Read More >>
Don't panic, but we're in the hospital. It looks like Gwendolyn has the stomach flu. We didn't blog much last week because...Read More >>
And BONUS -- he gave me this wonderful, intelligent, amazing, and funny little girl!Read More >>
We're a little under five-and-a-half months out from the Santa Barbara Marathon and I'm feeling great. I'm loving my training and it's become a normal part of my weekly routine -- two strengthening workouts followed by thirty minute runs and one one hour run. The intensity is definitely picking up...Read More >>
We are speechless. Completely without words. Doors are opening for our little girl and because of an incredible act of kindness, they are opening even faster.
Yesterday we had a trial for the Tobii Eye Gaze Communication Device. This "computer" is able to detect and follow Gwendolyn's eyes and how...
Remember last year when the "Gwennie" duck was plucked from the water out of 1,007 rubber ducks at the Troy Strawberry Festival? Remember how Penny and Melissa from Beb-e-ssentials donated all of the $1,000 winnings to the GSF?Well, they are at it again. And get this -- the City of Troy and the...Read More >>
100 miles. 100 miles in 30 hours. 100 miles though the Sierra Nevada Mountains. 100 miles through extreme heat and even snow. Yep, that crazy Stephen Taylor is doing it again -- 100 miles for Owen! And we think he's incredible!
Held the last weekend of June in Northern California, the Western...Read More >>
Meet Jenna Boguhn. A spunky six-year-old who loves school, having painted nails, playing dress up, and being with her two older sisters. And while Jenna is so much like any other adorable six-year-old, Jenna has Spinal Muscular Atrophy. This Sunday, Renee Gronowski, Jenna's aunt, will be running...Read More >>
Someone call the dude ranch. We've got a Buckaroo girl on our hands...
And, yes, the hat was all her idea. And, yes, she napped with it, tooRead More >>
Santa Barbara --> Get your rummage on to help end SMA!!! Rummage To Cure is THIS Saturday and it is going to be AWESOME! Treasures - check. The Burger Bus - check. Yummy Mummy treats - check. Shop and eat and shop some more!
Saturday, May 21st9:00 to 3:00
WHERE:Trinity Episcopal Church
1500...Read More >>