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Posts tagged with: Sma Tips

SMAandNutrition.org: Calling All SMA Type I Families, We Need YOUR

May 28, 2010 by Bill Strong
I don't think anyone would argue that nutrition and proper dietary management is a critical component to any Spinal Muscular Atrophy (SMA) care philosophy. There are several options and points of view, but, unfortunately, to date there has yet to be any data driven scientific research to provide a...
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Horse Therapy

April 15, 2010 by Victoria Strong
As you know Gwendolyn adoresmini horses. She just lights up whenever she is around them and clearly gets so much from seeing them. But Quicksilver, the mini horse breeder, is not super near us, which got me thinking about the possibility of being involved with a horse therapy non-profit called...
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We Have Ramps!

April 14, 2010 by Victoria Strong

We have ramps for our car and this is BIG news around here! Probably seems crazy, but up until recently we've actually been lifting the entire stroller loaded with Gwendolyn and all the machines into the van (the "we" means Bill because it all weighs over 50 pounds). Ramps have clearly been a...

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Easter Egg Fun

April 02, 2010 by Victoria Strong

Gramma is so creative and I am so glad. I have been busily collecting little gifts for Gwendolyn's Easter basket over the last few weeks (the usual sweets in the basket don't work for a child who doesn't eat by mouth), but I completely forgot about dying Easter eggs...and that's a perfect...

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"Walking"

March 02, 2010 by Victoria Strong
Yesterday was a first...well, at least in this form. Gwendolyn "walked." By walking I mean she was in the stander and we rolled it through the therapy unit. Simple enough for most folks, but this is the first time Gwendolyn has ever moved completely forward while standing. She has been using the...
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HideSeek

March 01, 2010 by Victoria Strong
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Gwendolyn Playing On Her iPod Touch; So Many Possibilities!

December 31, 2009 by Bill Strong
Gwendolyn's big Christmas present this year was an iPod Touch. We think the super-sensitive "touch" screen and the thousands of fun applications through the App Store will be great for her to play independently -- something that we're always struggling with given her challenges. We also think the...
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Great AFO Socks, SmartKnitKIDS seamless sensitivity socks

December 05, 2009 by Bill Strong
Finding socks that work well with Gwendolyn's AFOs has been challenging. Most children's socks have raised bumps, lines, or patterns and are too big or too small or too high or too short. And it's not like Nike is manufacturing Dri-FIT technology socks for toddlers, so the fabric most children's...
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Gwendolyn's Wheels (watch your toes…)

December 03, 2009 by Bill Strong
Gwendolyn has been practicing and practicing and practicing in her power chair and she's starting to really get the hang of it. She loves it -- and that's absolutely the most important thing. Her face beams when she is in her chair and she loves "finding" Daddy and Mommy and Gramma. Watching her...
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Power Chair Practice

November 12, 2009 by Bill Strong
Gwendolyn likes to move it, move it! She LOVES the power chair and gets so excited when we go in the backyard to practice, practice, practice. We are practicing every afternoon and she totally gets it -- now we just have to get the modifications to stay in the correct place. If you hear a lot of...
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Critical RSV Vaccine Denied, Fought, then Approved by Health Net

November 11, 2009 by Bill Strong

I was more or less expecting a denial of coverage from Health Net this year for the very expensive Synagis vaccination that helps protect at-risk children against the human respiratory syncytial virus (RSV). RSV is the major cause of lower respiratory tract infection and hospital visits for infants...

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Gwendolyn's First Steps

November 03, 2009 by Bill Strong

Over the last month we've been prepping Gwendolyn and getting her comfortable with her hot pink demo power chair at one of her therapy sessions every week. She's taken baby steps, as usual, warming up to the idea at first and slowly making her own decision when she's ready to take the next step.

...

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Warming Up To That Power Chair

October 20, 2009 by Bill Strong
On Monday, Gwendolyn had a big, huge, gigantic personal breakthrough with her demo pink power chair at our weekly therapy appointment. We've been careful not to push her too quickly into the chair, knowing that it was going to be a major step for her and one that she had to make on her own -- at...
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Warming Up To The Power Chair

September 30, 2009 by Bill Strong
On Monday, we had very exciting "first" -- and much sooner than we anticipated. Gwendolyn got to see and try a Permobil K300 power chair. And it was hot pink!

Our experience with new things, especially big new things for Gwendolyn, is that she needs a warm-up period to get used to the idea and,...

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Gwendolyn Update

September 17, 2009 by Victoria Strong
It has been a busy few days. We are home from Stanford now and are continuing to try to figure out what is going on with Gwendolyn. We are still a bit worried, but are relieved to be tackling the issues.

She is doing fine on the antibiotic, but we are watching her closely to make sure her...

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Serial Casting Success and City Proclamations

August 26, 2009 by Bill Strong
All in a day's work for our little fighter Gwendolyn...

This morning we took Gwendolyn to see her orthopedist, Dr. Early, to have her serial casting performed. Victoria and I were nervous for her, but Gwendolyn was a trooper as usual -- she actually smiled at Dr. Early through almost the entire...

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Serial Casting

August 24, 2009 by Bill Strong
Tomorrow, we will be taking Gwendolyn for serial casting. No, we're not exactly happy about it, but it is necessary and will lead to more good, adventurous, fun stuff for our little fighter Gwendolyn. Serial casting is a noninvasive procedure where Gwendolyn's Orthopedist, Dr. Sean Early, will put...
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Hamusuta: The Happy Hamster

August 05, 2009 by Bill Strong
We have a new fabulous toy for Gwendolyn! Gwendolyn's awesome cousin, Camie, immediately thought of her when she saw this crazy toy while on a high school summer trip to Greece and Italy. (What an awesome teenager, right? On a dream trip and still thinking of her baby cousin!) She brought it ALL...
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Possible Solution to the EASyS Stroller Storage Shortfall

July 22, 2009 by Bill Strong
Like us, many SMA families use the EASyS wheelchair stroller from ExoMotion to get out and about. Given what we take out with us we haven't found space on the stroller to be a problem, but we've heard several other families have had issues with the limited storage space in the tray underneath the...
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How We Made This Trip Work

July 18, 2009 by Bill Strong

We've found doing anything outside of our home with Gwendolyn to be challenging. Her machines, the power issues, being outside of our comfort zone, having no night nurse, the change in schedule, exposure to viruses, the added stress, etc. But, we also know how much Gwendolyn enjoys getting out...

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