Blog Archive 06/2008

A passed out Gwendolyn after her big jazz concert outing

June 28, 2008 by Bill Strong

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Gwendolyn rocks the Santa Barbara Courthouse

June 27, 2008 by Bill Strong

Ok, it wasn't exactly rocking, it was live, local jazz outside at the Santa Barbara Courthouse Sunken Garden, but we all had a great time together on Friday evening and THE QUINNY STROLLER HAS OFFICIALLY REDEEMED ITSELF. Victoria reached deep into her bag of tricks and cooked up a creative way to...

First FDA approved stem cell trials might be in Irvine, CA focused

June 26, 2008 by Bill Strong

A small privately held company based in Irvine, California called California Stem Cell, Inc. (www.californiastemcell.com), may be the first to gain FDA approval on a clinical trial to test embryonic stem cell treatment in humans and SMA would be one of the first two diseases that the company would...

Gwendolyn's Respiratory Treatment Regimen

June 25, 2008 by Bill Strong

Although the core of our philosophy on Gwendolyn's care is based on several synergistic factors, in our opinion her routine respiratory treatment regimen is probably the most important. When Gwendolyn is in good respiratory health we religiously perform this regimen five times a day; four times...

It's really hot in SB!!!

June 21, 2008 by Bill Strong

But I'm ready for summer in my cute hibiscus sun dress. Which way to the beach?

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Gwendolyn's g-tube

June 21, 2008 by Bill Strong

Pictured below is Gwendolyn's Mic-Key button (gastric feeding tube or g-tube). Since Gwendolyn is at extremely high risk of aspiration and has lost her ability to swallow, the Mic-Key button is extremely important as it allows us to administer her feeds and give her liquid medication, etc. directly...

BatteryGeek.net = very good; Quinny stroller = not so good

June 19, 2008 by Bill Strong

In order for us to go outside of the house we have to take most of Gwendolyn's machines with us -- bi-pap, suction, pulse ox, oxygen, and sometimes her feeding machine. Most of the machines work on battery but the most important machine, Gwendolyn's bi-pap, does not. So we have to carry a battery...

"Gwendolyn" - a poem by GrandPa (Bill Withey)

June 18, 2008 by Bill Strong

Gwendolyn.

Oh, Gwendolyn.

Thou dost negate a world confined.

Thy serenity and radiant, empowering smile

Efface cruel entrapment with thy joy.

Thy bright eyes and loving glances

Show us the quiet and gentle comfort

Of ancient wisdom unalloyed.

Foolish cares, from thee we learn, are naught

When through...

Father's Day

June 17, 2008 by Bill Strong

We enjoyed a beautiful Father's Day BBQ with our family on Saturday. Victoria's dad, my mom, my sister, and my brother-in-law came up and everyone had a great time just being together. For Victoria and me, it was as relaxed as we've been in months and was definitely a special day for both of us.

It...

A bit on edge earlier this week

June 13, 2008 by Bill Strong

On Sunday night and Monday Gwendolyn was running a fever off and on. She also seemed a bit fussy, which is very unusual for her, and we noticed that her secretions were a bit thicker than normal. On Monday night she was sleeping on the couch next to Victoria and me and her oxygen stats dropped...