Hayden’s Comfy Cushies –> Must Have Padding for the EASyS

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 it to countless families — without it, […]

Getting Out With Gwendolyn…At Some Point, We Just Started Living

I wrote a blog post in February 2009 titled 25 Honest Things. At the time there was a Facebook “25 Things!” thing 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 […]

New Awesome SMA Resource: InsideSMA

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 manage mucus plugs to strategies […]

It Arrived!!! Let the Adventures Begin!

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 went to Gwendolyn’s therapy appointment with fingers crossed that her chair would really […]

Family Photos

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 incredibly talented and amazingly kind and […]

Testing Gwendolyn’s Ambu Bag Before An Emergency

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 issues, etc. So far we’ve managed to pull Gwendolyn […]

Fun With SMA Friends

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 Preschooler! First Day of School Today!

Gwendolyn is going to preschool. She’s 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. It’s funny because this is never something Bill and I talked about. We never asked permission from anyone. We both just knew I […]

Little Star Love

Gwendolyn is in love — L.O.V.E.  His name is Little Star and he is her mini horse best friend!!! Little Star moved to a new home over by the beach about three weeks ago and we have been going out to see him every chance we get. The best part is Gwendolyn completely controls everything. […]

Therapy and G’s Awesome Therapists

Gwendolyn has therapy every day — on some days twice. The therapy ranges from stretching to play and sometimes a combination of the two, but all of it allows Gwendolyn to experience things she could not without the help of some very special people. Therapy for SMA children is a challenge. It’s not rehabilitation — […]