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Posts tagged with: Gwendolyn

Christmas 2010

December 28, 2010 by Victoria Strong
The last few days have been really special...emotional. Seeing Gwendolyn fully embrace the excitement, the rituals, the stories that surround Christmas simply leaves us weak at the knees. We want nothing more than for our little girl to feel happy and included -- and she did in a big way.

We...

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Happy Holidays!

December 24, 2010 by Victoria Strong

We are so grateful for all of you who follow our journey with so much encouragement and kindness

We are so grateful for your incredible generosity, support and belief in what we are doing with the Gwendolyn Strong Foundation

We are so grateful for our friends and family (both near and far) who...

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It Arrived!!! Let the Adventures Begin!

December 22, 2010 by Victoria Strong

Yep...it's an extra special, super duper, really big, awesome, stupendous surprise... just in time for Christmas! Gwendolyn's POWER CHAIR ARRIVED! EEEEEEEEEEEE! Yipee! Yipee! We are pretty darn excited around here...but most importantly, Gwendolyn is OVER. THE. MOON!!!

Yesterday all three of us...

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The MDA and Gwendolyn

December 20, 2010 by Victoria Strong
SMA is a muscular dystrophy disease. Like cancer and its many awful versions, there are many forms of muscular dystrophy that fall under this one umbrella. The Muscular Dystrophy Association was the first organization to really put a face to these many diseases with long and often hard to pronounce...
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Another Health Net Insurance Premium Increase

December 18, 2010 by Bill Strong
Okay. Okay. Okay. I actually should be throwing a massive party this year compared to the last two. Health Net blessed our family with a palatable -- if you can call any increase palatable - 9.75% annual increase in our health insurance premiums. Not too shabby compared to the 35% annual increase...
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Good Things: Monterey Bay Aquarium With Hayden

December 17, 2010 by Victoria Strong

Oh we have some pretty big "good things" this week with numero uno being that Gwendolyn is doing well! We are still watching her closely and hoping napping and diet changes will boost her energy level back up. We've been taking it easy since we got home and "Nap Boot Camp" has officially started....

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Great News

December 13, 2010 by Victoria Strong

Good news -- GREAT news! Gwendolyn's appointment today went really well. All things considered, Dr. Yuan is actually really pleased with how Gwendolyn looks and sounds. Her labs came back excellent. Her x-ray was fabulous. And overall she is in tip-top shape. WHEW! We talked to Dr. Yuan for hours...

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Some Worry

December 13, 2010 by Victoria Strong
We are worried. We have been for a month now, but we keep hoping we will see improvement. We keep hoping we aren't seeing what we are seeing. Gwendolyn just isn't herself. She isn't sick. She wants to do and go and see, but her energy is low. She is not coming off bipap for very long. She is...
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Good Things For Gwendolyn

December 11, 2010 by Victoria Strong
Two weeks ago I posted "Good Things For Gwendolyn" about some of the fun, positive things in Gwendolyn's life. I have seen other bloggers make lists of positives -- especially during a difficult time -- and I love it. I have even seen some make their good things list a regular feature and I want to...
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Family Photos

December 07, 2010 by Victoria Strong

Yesterday we had our holiday family photos taken with Jennifer Foster of Z's The Day Photography and Design. Well, family photos really as we have never had professional photos done specifically for the holidays before. Over the last three years we have had the honor of working with some...

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Snow At The Santa Barbara Zoo

December 06, 2010 by Victoria Strong

We had an AWESOME day yesterday! Awesome! And we needed it. The Santa Barbara Zoo hosted their annual "Snow Leopard Festival" (you may remember we went last year). The Santa Barbara Zoo actually trucks in piles and piles of ice to create snow for a one day really special event. They build a...

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To Our SMA Family: Moving Beyond This

December 05, 2010 by Victoria Strong
Earlier this week our family and our foundation was publicly attacked on facebook by another SMA family who run their own foundation in a note they titled "Glass Houses." While the specific allegations are beyond ridiculous, the action of bringing this slander to a public forum created enormous...
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Thanksgiving Weekend

November 29, 2010 by Victoria Strong

We can only be said to be alive in those moments when our hearts are conscious of our treasures. ~Thornton Wilder

We have had a lovely long Thanksgiving -- a quiet, simple, fun family weekend. And it feels so good! And throughout it all, we were especially conscious of our many blessings! I know we...

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Testing Gwendolyn’s Ambu Bag Before An Emergency

November 27, 2010 by Bill Strong

Let's face it, emergencies are a fact of life for SMA families and we've had our share of urgent medical situations over the years with Gwendolyn -- collapsed lung, regular mucus plugs, power outages, sudden vomit with fear of aspiration, forest fires, battery failures, life-critical equipment...

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Good Things For Gwendolyn

November 24, 2010 by Victoria Strong

GwendolynStrong.com has been a bit heavy of late. And while all of this is going on for Bill and me, we try really hard to not let it be part of Gwendolyn's life. No, Gwendolyn is 3 and should get to be just 3! And like most 3 year olds, the world is her oyster and fun can be found everywhere! So...

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Thinking of Jonas

November 22, 2010 by Victoria Strong

On Thursday night we learned that our dear sweet special friend Jonas Coleman had passed away -- a gorgeous blue-eyed almost 3-year-old darling little boy. Tomorrow is his funeral. And we are heartbroken.

And while I try to sit with the thoughts of him now being able to run free, of him no longer...

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Fun With SMA Friends

November 18, 2010 by Victoria Strong

Ahh what a weekend! It was awesome!!! GSF's Golf For A Cure was held on Friday (more on that soon) and we were so, so excited that several of our SMA friends came into town to support it and spend time with us. The Calafiore's, Chris and Jennifer, and their darling daughter, Hayden, stayed at our...

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Kismet Kindness

November 11, 2010 by Victoria Strong
Don't worry -- we are doing okay. It's funny how sometimes just venting brings relief. And we are definitely feeling encouraged and supported by your kind comments and emails -- THANK YOU! And yesterday we received the most wonderful packages from four different very special friends. It is amazing...
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Truth

November 10, 2010 by Victoria Strong
Truth.

We are spent.

Tired.

Stretched.

Stressed.

We were coasting. Coping. Busy with a capital "B", but glad it was all positive, good stuff.

But. It's not all positive.

Gwendolyn is fine. Thank God. But "fine" in the SMA world is still an awful lot of life saving. And that is hard. Plain hard. Last...

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Horsing Around

November 08, 2010 by Victoria Strong
Yep, it's gettin' rather horsey around here. A stable full of them. And Gwendolyn is in hog...er...horse heaven! Gwendolyn was nicely spoiled for her birthday and she is now a regular horse collector. My baby has gone from a muppet maven to an equestrian. I can see her transitioning from all things...
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