Posts tagged with: Sma Tips
And...Read More >>
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 >>
It's no secret, Gwendolyn LOVES to swing on the swings. We can't even think about walking past the park near our house these days without taking her on the swings. And at her preschool, she's on the swings every single day. She loves it. And we love it.
Most of the time we hold Gwendolyn in our lap...Read More >>
In our experience, power and backup power for Gwendolyn's various life-critical machines can be -- well -- a pain in the neck and, when we haven't been prepared, extremely stressful and dangerous. We feel like we've encountered (or stumbled through) just about every power issue and emergency you...Read More >>
In our personal experience, getting your arms around life-critical machines and supplies can be daunting in the process of dealing with a spinal muscular atrophy diagnosis. What will we need? Where will get all this stuff? What do others use? How are we going to figure all of this out? We remember...Read More >>
SMA families are exceptionally creative -- out of necessity and out of devotion. And Hayden Calafiore's grandmother, Shelly, is proving this once again. There is pretty much one stroller/wheelchair option for SMA Type 1 families -- the EASyS. The EASyS is an awesome chair and we have recommended...Read More >>
I wrote a blog post in February 2009 titled 25 Honest Things. At the time there was a Facebook "25 Things!" going around and, well, these were my 25 things. None of this has much to do with us getting out with Gwendolyn, but I vividly remember a comment to that post from an SMA mom with a...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 >>
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 >>
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...Read More >>
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...Read More >>
Gwendolyn is going to preschool. Shes going to preschool. PRESCHOOL! Today is the big day! Her very first day of school. Can you believe it?
So the logistics.
I am going with her. Its funny because this is never something Bill and I talked about. We never asked permission from anyone. We...Read More >>
Gwendolyn's disabilities are such that we...Read More >>
Gwendolyn...Read More >>
And the winner is.....
Sydney -- 5 years old, SMA Type 1, from MichiganChessa -- 14 years old, SMA Type 2, from Georgia
We were so moved by the more than 100 entries that we simply couldn't stop at one iPad. Congratulations Sydney and Chessa --...Read More >>
The Strong family, together with Milverstead Publishing, is super excited to be giving away an Apple iPad to one lucky person on SMA Space.
Yes, that's right. One family impacted by spinal muscular atrophy could win a FREE Apple iPad! Doesn't cost a thing. No strings attached. You just submit an...Read More >>