Posts tagged with: Parenting A Child With Disabilities
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...Read More >>
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...Read More >>
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...
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 >>
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...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 >>
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 >>
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...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 >>
GwendolynStrong.com 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...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 >>
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...Read More >>
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...Read More >>