Posts tagged with: Video
Over the last several years, we haven't shied away from lending our voices to advocate on behalf of injustices we have faced. Most of these injustices, if not all, are sides to issues that we may have never become aware of had it not been for the life-altering reality of Gwendolyn's Spinal Muscular...Read More >>
We are so lucky that Diane (Little Star's Mommy) is such a dear friend. She always includes us and she always, always makes Gwendolyn feel special. We met...Read More >>
I need a good laugh. Don't we all? Having a good laugh just seems to help me refocus... look at things in a new way... let off steam. A good laugh makes my heart smile and I think...Read More >>
Firstly, thank you all so much for the many birthday wishes. You really made me feel special and cared for -- and your messages, cards, and Facebook posts meant a lot to me (although Bill said I was clogging up his fb feed )!!! I have to say that this may have been the best birthday ever.
Bill...Read More >>
The Gooden family has been hard at work creating a really incredible resource for SMA families -- InsideSMA. I always love when families come up with something new and innovative to help others!!! The tips, tricks, and advice on here are really wonderful. Everything from how to prepare for and...Read More >>
Today was an incredible day for us and for Gwendolyn. Her shiny new power chair has been in for about a month, but we've been tweaking and fine tuning the set-up weekly so it fits perfectly and provides her the best positioning to drive independently. There are still more tweaks to be made, but...Read More >>
A few days ago I told you about the upcoming New Bedford Half Marathon on March 20th. And since that post, a dozen new people have joined the team! So the number is now over 40! 4-0 all running on one day, in one race, to help end this brutal disease!!!
Running for a cause is nothing new -- in...Read More >>
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...Read More >>
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....Read More >>
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...Read More >>
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...Read More >>
Our friends Hillary and Keith Schmid, parents to twins Zane and Avery, are amazing. Their determination and take-the-bull-by-the-horns spirit continually motivates us. There are just certain people in the world that see an issue and, instead of complaining about it, are stirred to action. And that...Read More >>
Today is the first ever "SMA BLOG PARTY!" Thanks for joining us by reading about the #1 genetic killer of young children, posting about this cruel disease, and sharing the links with others. The idea of the "SMA BLOG PARTY" is simple -- bloggers come together to 1) Talk about SMA, 2) Put a face to...Read More >>
Birthday bonanza is beginning! Hold on to your hats!
Can you believe it? Our little girl is turning 3!!! And we are celebrating all month long leading up to the official big day -- October 4th! One month away!!! We are cheerleading all 36 very special months!!! And we hope you will join in!
We are...Read More >>
We had so much fun visiting with my sister, brother-in-law, and nephews...and Grandpa came over, too. They are the best and there is nothing like laughing the night away with them. And Gwendolyn loves being read to, smothered with hugs and cuddles, kissed, tickled, and taken on fun adventures with...Read More >>