Blog Archive 05/2009

Mommy's Hat

May 31, 2009 by Bill Strong
Gwendolyn absolutely loved when Mommy let her try on her hat. It may be a tad on the large side, but look how proud she is wearing Mommy's hat -- she is clearing enthralled (so much so she went cross-eyed) smile
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New Fun Toy and a Pair of Pink Crocs!

May 30, 2009 by Bill Strong
Gramma brought a fun new toy that Gwendolyn enjoyed playing with her last week. Gwendolyn loved choosing which color wooden "nail" to take on next and having Gramma help her pound, pound, pound them with the hammer. You can tell she really liked the feel of the impact of the hammer and the noise...
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Muppet Mayhem

May 29, 2009 by Victoria Strong
You are never going to believe it! Today Miss Princess received another pressie. This one was from Aunt Elizabeth, Uncle Chad and cousins William and Henry. It is funny because today is little Henry's 2nd birthday and so he should be opening pressies from us, too! Gwendolyn excitedly helped unwrap...
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The Gang is Multiplying

May 29, 2009 by Victoria Strong
Yesterday, a big box arrived with Gwendolyn's name on it. She completely understands the word "present" now and was super excited to open it. I had been given a little heads up that something special was on its way from our friends Donna and Pete, who lost their beautiful youngest daughter, Andrea,...
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Being Social with SMA

May 28, 2009 by Victoria Strong

Gwendolyn is truly a social child. She has been since she was a tiny baby. During our first hospitalization when she was only 9-weeks-old, she showed no fear toward strangers, and instead beckoned every nurse with a sweet grin and a look that said, "Hi, come play with me." And she hasn't slowed...
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Kacie Jean Photo Session

May 26, 2009 by Victoria Strong

My friend, Ronda, nominated me for a Mother's Day award, which was an enormous honor in itself. But the prize for winning was so awesome and the most cherished gift anyone can give us -- photos of Gwendolyn. We met with Kacie Jean on Friday for our winning photoshoot and I am just over the moon...

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Old Friends and New Friends

May 25, 2009 by Victoria Strong
We have had a really wonderful long weekend visiting with both old friends and new ones. We feel so very lucky to have such supportive and awesome people in our lives.

Yesterday, one of my oldest friends, Summer, and her mom, Sheri, my second-mom, spent the day with us chatting, catching up, and...
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Live New England Lobstas…Yummy!

May 24, 2009 by Bill Strong
Yesterday, a surprise box was delivered to our house in the morning. One of my best friends, Matt (who lives in Boston), sent us live lobsters from Legal Sea Foods, a New England mainstay. Matt was born and raised in Boston so I've heard my fair share of Legal Sea Foods stories over the years. But,...
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Our Little Butterfly

May 24, 2009 by Victoria Strong
Firstly, it seems Gwendolyn is doing okay. We are definitely watching her closely, but we have not had any other incidents. (Thank goodness and knock on wood!) She is most comfortable on BiPAP and can only come off of it for short periods of time. We don't like that, but there are no clear signals...
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SMA Bill Re-Introduced in U.S. Senate

May 22, 2009 by Bill Strong
Great news to start the holiday weekend!

Today, the "SMA Treatment Acceleration Act of 2009", or S. 1158, was introduced in the U.S. Senate by . It joins the
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