This Moment.

When Gwendolyn was first diagnosed, within two weeks we were hit like a ton of bricks with the reality of SMA —  a consultation trip turned into a month-long hospital stay at Stanford, new routines, new machines, a surgery, so much uncertainty, a failed ambulance ride home nightmare, a collapsed lung followed by another hospital […]

A rough week, but grateful

Gwendolyn has had another rough week. And this weekend was down right lousy. The good news is that from a respiratory standpoint she is healthy — that is very, very good news for SMA. The bad news is this darn infection (or the problem we can’t seem to figure out) just won’t go away. It […]

Gwendolyn Tests Tobii and an Act of Kindness Leaves Us Speechless

We are speechless. Completely without words. Doors are opening for our little girl and because of an incredible act of kindness, they are opening even faster. Yesterday we had a trial for the Tobii Eye Gaze Communication Device. This “computer” is able to detect and follow Gwendolyn’s eyes and how she moves them. Using her […]

Stander!

For the last several months at therapy, Gwendolyn has been working hard on practicing in her power chair and perfecting the setup and controls to give her the best opportunity to drive and drive and drive and drive and drive. And while she looooooves her power chair, the last couple of weeks Gwendolyn has been […]

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 […]

Meeting Congresswoman Capps

Today we met with Congresswoman Lois Capps at her Santa Barbara office. We have met with, emailed, and spoken with her Health Aides many times before, but we have never actually met Representative Capps. The first thing you should know is that she is really super nice. (I found myself wanting to invite her over […]

Our Power Chair Superwoman

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 today […]

Camping!

Three words: Camping with Hayden! Yep and that equals a VERY happy little girl…make that two very happy little girls…and four very happy parents watching them. Visualize: fishing, dancing, camp fire, sparklers, family, FUN! Chris and Jennifer set everything up. They are spending time in Pismo Beach which is only about an hour and half from […]