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Posts tagged with: Featured

Good Things For Gwendolyn: Wizard of Oz

June 29, 2011 by Victoria Strong

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...

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Strawberry Festival Goodness

June 28, 2011 by Victoria Strong
The Strawberry Festival in Troy, Ohio was just a few weeks ago and it was amazing! The truly remarkable Penny and Melissa, who own the fabulous children's accessory storeBeb-e-ssentials,hosted a booth at the festival and made it their mission to increase SMA awareness. You may remember the...
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Father’s Day Under the Big Top

June 26, 2011 by Bill Strong
To be honest, I've always felt a bit odd about Father's Day. Sure I appreciate being appreciated, but I don't ever feel unappreciated. And I definitely don't need a dedicated day every year to remind me how fortunate I am to be Gwendolyn's daddy. For me, every day Gwendolyn is with us is my...
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Getting Back To Normal

June 22, 2011 by Victoria Strong
I just want to thank everyone for being so supportive this last week. SMA is tough and while Bill and I always try to focus on what we can control and what we can do to make a difference, sometimes the reality of what we are facing becomes too much. I know it isn't easy to read. I know it isn't...
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Spinal Muscular Atrophy Power and Backup Power

June 20, 2011 by Bill Strong

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...

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My Favorite Things With My Daddy By Gwendolyn Strong

June 19, 2011 by Victoria Strong

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

snuggling

dancing

hugs.

I love my Daddy.

Happy Father's Day to the best father in the entire universe!

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Having a hard time

June 16, 2011 by Victoria Strong

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...

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readgive rummage

June 14, 2011 by Victoria Strong
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Gwendolyn In Hospital But On The Mend

June 13, 2011 by Bill Strong
UPDATE: We are now home and Gwendolyn is doing well. She's still tired and we are still keeping a close eye on her, but she's rehydrated and glad to be in her own bed.

---

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...

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8 Years.

June 07, 2011 by Victoria Strong
8 years ago today I married this wonderful, intelligent, amazing, and funny man...And 8 years later I think he's still wonderful, intelligent, amazing, and funny... even more so...and I love him.

And BONUS -- he gave me this wonderful, intelligent, amazing, and funny little girl!

(Crazy -- we've...
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Team GSF SB Marathon: 20 Plus Runners and a Few Things I’ve Learned

June 05, 2011 by Bill Strong

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...

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Gwendolyn Tests Tobii and an Act of Kindness Leaves Us Speechless

June 03, 2011 by Victoria Strong

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...

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The Great Duck Race Round Two

June 02, 2011 by Victoria Strong

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...

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Blueberries, BBQ, and I Madonnari

May 31, 2011 by Victoria Strong
We had a wonderful weekend filled with friends, sunshine, and even some new adventures. On Friday we went to a friend's house for a play date. On Saturday we went blueberry picking at a charming farm. On Sunday we went to a BBQ at a friend's house. And on Monday we attended the I Madonnari Festival...
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Good Things For Gwendolyn: Being Like Her Friends - Reading, Climbing

May 27, 2011 by Victoria Strong
It has been an exciting week at school this week. Gwendolyn "climbed" a tree and this is now her favorite thing to do. She saw all the other big girls in the tree and looked at me with an expression that said, Mom, we are doing this. It took some navigating, but seeing her so determined I knew I...
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100 Miles For Owen. Stephen Taylor Running Western States 100 (Again)

May 27, 2011 by Victoria Strong

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...

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Team Jenna Raises Over $1,200 and Races This Sunday

May 25, 2011 by Victoria Strong

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...

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Buckaroo Girl

May 24, 2011 by Victoria Strong

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, too smile

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Rummage To Cure in Santa Barbara Raises $3,400 for The GSF

May 23, 2011 by Victoria Strong
Santa Barbara's Rummage To Cure was a HUGE success and Team Gwendolyn ROCKS! Yep, they are A-M-A-Z-I-N-G! And Saturday's sale was another example of their awesomeness. So many in the community got involved. So many made this a success. And we are so, so grateful. And... $3,400 was raised for The...
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Santa Barbara Rummage To Cure THIS Saturday!

May 19, 2011 by Victoria Strong

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!

WHEN:

Saturday, May 21st

9:00 to 3:00

WHERE:

Trinity Episcopal Church

1500...

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