Posts tagged with: Parenting A Child With Disabilities

This Moment.

September 02, 2011 by Victoria Strong

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...


A rough week, but grateful

August 22, 2011 by Victoria Strong

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 is now a...


Gwendolyn Tests Tobii and an Act of Kindness Leaves Us Speechless

June 03, 2011 by Victoria Strong

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...



March 16, 2011 by Bill Strong

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

March 10, 2011 by Victoria Strong

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...


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

February 16, 2011 by Bill Strong

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...


New Awesome SMA Resouce: InsideSMA

February 13, 2011 by Victoria Strong

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...


Meeting Congresswoman Capps

February 01, 2011 by Victoria Strong

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...


Our Power Chair Superwoman

January 18, 2011 by Bill Strong

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...



December 29, 2010 by Victoria Strong
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...

It Arrived!!! Let the Adventures Begin!

December 22, 2010 by Victoria Strong'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...


Good Things: Monterey Bay Aquarium With Hayden

December 17, 2010 by Victoria Strong

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....


Great News

December 13, 2010 by Victoria Strong

Good news -- GREAT news! Gwendolyn's appointment today went really well. All things considered, Dr. Yuan is actually really pleased with how Gwendolyn looks and sounds. Her labs came back excellent. Her x-ray was fabulous. And overall she is in tip-top shape. WHEW! We talked to Dr. Yuan for hours...


Good Things For Gwendolyn

December 11, 2010 by Victoria Strong
Two weeks ago I posted "Good Things For Gwendolyn" about some of the fun, positive things in Gwendolyn's life. I have seen other bloggers make lists of positives -- especially during a difficult time -- and I love it. I have even seen some make their good things list a regular feature and I want to...

Family Photos

December 07, 2010 by Victoria Strong

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...


Testing Gwendolyn’s Ambu Bag Before An Emergency

November 27, 2010 by Bill Strong

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...


Good Things For Gwendolyn

November 24, 2010 by Victoria Strong has been a bit heavy of late. And while all of this is going on for Bill and me, we try really hard to not let it be part of Gwendolyn's life. No, Gwendolyn is 3 and should get to be just 3! And like most 3 year olds, the world is her oyster and fun can be found everywhere! So...


Fun With SMA Friends

November 18, 2010 by Victoria Strong

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...



November 10, 2010 by Victoria Strong

We are spent.




We were coasting. Coping. Busy with a capital "B", but glad it was all positive, good stuff.

But. It's not all positive.

Gwendolyn is fine. Thank God. But "fine" in the SMA world is still an awful lot of life saving. And that is hard. Plain hard. Last...


First Day of Preschool Recap

October 21, 2010 by Victoria Strong

The first day of preschool was a hit! An absolute standing ovation!!! And Gwendolyn can't wait for more today. There are so many things that went really well, and I am so excited about it all, but there are a couple little stories that just stood out as really adorable.

The first was...


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