Blog Archive 09/2008

Sunday stroll on the coast

September 15, 2008 by Bill Strong

We piled into the GVan on Sunday and took a stroll along the
coastline. It's so much easier now that we broke down and got a mini-
van. Gwendolyn slept in her stroller most of the walk, but she loved
feeling the wind in her hair once she woke up.

One thing kind of funny that we've noticed is that she...

20,000 PetitionToCureSMA.com signatures and counting…

September 15, 2008 by Bill Strong

Today, nearly two months to the day after launching PetitionToCureSMA.com, we received our 20,000th signature! With your help, we have attained this milestone and Congress is paying attention. In that short time, 18 new Representatives and 4 new Senators have officially signed on to consponsor the...

Gwendolyn's new AFOs (ankle-foot orthosis)

September 13, 2008 by Bill Strong

These are Gwendolyn's new AFOs (ankle-foot orthosis); we're calling them her "moon boots":) AFOs are braces that will help keep Gwendolyn's feet at neutral position to, in conjunction with regular physical theraphy, prevent contractures in her ankles. Contractures, which are the shortening of...

Thank you for helping promote our petition!

September 12, 2008 by Bill Strong

We have been humbled by the number of publications and blogs that have embraced Gwendolyn's story. We would like to thank a few of them for running stories on her journey, SMA, and our petition. Thank you for your help to end this horrible disease!

You can click on any of the links below to go to or...

Sleeping Beauty

September 11, 2008 by Victoria

We are all exhausted and enjoying being home, sweet, home -- with a new bathroom! We are slowly catching up and catching our breath, reading a stack of mail, and filling in all of Gwendolyn's wonderful caretakers on her eventful few weeks...she is so glad to see them!

Comfy cozy pink slippers

September 11, 2008 by Bill Strong

Gwendolyn sporting her fuzzy warm pink slippers and snuggling her pink
teddy this morning. Time to wake up

Smile, You're on Camera—Great video monitor

September 10, 2008 by Bill Strong

I know this is random, but this has really helped us. This video monitor, the BebeSounds TV984, has been great for our situation. Since we have to watch Gwendolyn 24/7 for suctioning, etc., at bedtime we used to put her to bed next to us on the couch so we could watch her and then move her into her...

Stanford cattle-run

September 08, 2008 by Bill Strong

We all had a wonderful time with Gramma last week. Gwendolyn loved
playing and swimming and just plain being spoiled (we were all
spoiled). We arrived back home on Sunday via our new mini-van (the G-
Van) and our house was actually in pretty good order given the
extensive surprise plumbing project...

Caught in the act

September 07, 2008 by Bill Strong

Gwendolyn's new favorite trick is to take her favorite toys, the
trusty green chirping cricket in this case, and toss them off of the
side of the couch. When she does it she looks at whoever is sitting
next to her with such a playful, proud, excited look on her face
(sometimes a little chuckle...

New MIC-KEY button please

September 06, 2008 by Bill Strong

I was putting Gwendolyn down for her nap this morning and I noticed
that her MIC-KEY button, the button in her stomach that her g-tube
connects to, seemed to be very loose and pulling out. Gramma helped
hold the old one in and I went to run and get a spare MIC-KEY kit we
had with us. The button is...