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Posts tagged with: Daily Care

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...

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Gwendolyn’s AA Diet Update: New Movements

July 27, 2010 by Bill Strong
It's been a bit over a month since we started Gwendolyn on her new Amino Acid (AA) diet and everything has been going really, really well. We were pretty nervous about the switch, but Gwendolyn has not had any issues with the transition other than minor constipation in the very beginning. Since the...
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Gwendolyn’s New Food Regimen—The AA Diet

June 27, 2010 by Bill Strong
This week we started Gwendolyn on a new food regimen, the Amino Acid (AA) diet. This represents a pretty big shift for Gwendolyn and we are appropriately nervous. Any change is always worrisome, but we are also hopeful that the AA diet will benefit Gwendolyn's overall energy and health.

Gwendolyn...

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Bathing Beauty

June 23, 2010 by Victoria Strong
Gwendolyn loves her bath. She gets so excited when we ask her if she's ready. It is definitely one of her favorite times of the day. She can move her arms and legs in the water. She gets to sing songs. She gets to play with her toys. And then when it is all finished, the artist arrives to coif her...
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Big Girl Salon Hair Cut

February 16, 2010 by Victoria Strong
This weekend we took Gwendolyn to the big girl fancy salon that Mommy and Daddy go to, Walter Claudio Salon Spa, for her official second hair cut. The whole salon idea came from how much she loves "Daddy Salon" after her bath and that she was in bad need of a hair cut coupled with my stylist, Jen,...
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Watching Gwendolyn

February 05, 2010 by Victoria Strong
We are a little concerned about Gwendolyn. We have been watching her closely for several weeks. Nothing major is happening, but whenever we notice any subtle changes our worry-meter goes off. She is not tolerating being off bipap for long, has been waking up crying in the night, and has had some...
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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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Birthday, Check Up and Christmas Walk

December 04, 2009 by Victoria Strong
Today is Gwendolyn's 26th month birthday! Hooray! We sang Gwendolyn's favorite song (Happy Birthday to Gwendolyn) and are heading out for walk to get a special birthday balloon!

Yesterday afternoon we went to our awesome pediatrician office to get the second dose of the H1N1 vaccine and the first...
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Vaccinated!

October 29, 2009 by Victoria Strong

We are H1N1 vaccinated! We have been waiting for the shot form of the vaccine to come into our county and started to get nervous as more time passed (and as H1N1 deaths begin in our local hospital). Well, today it arrived and Gwendolyn's pediatrician called us bright and early to come and get it....
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Feeling Better…

October 18, 2009 by Victoria Strong

Our little angel is feeling much better today. She woke up all smiles, napped well, wanted to read books, sing songs, and even had the energy to dance to Beyonce's "All the Single Ladies" (which, if done properly, takes A LOT of energy smile ). And she didn't have a single choking episode today. Whew,...
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Gwendolyn (and Bill…and now Victoria) Update

October 16, 2009 by Bill Strong
The past few days have been tough to say the least. Gwendolyn's ear infection/cold is still hanging around and that is EXTREMELY and constantly stressful for us -- 24/7. Any illness is extremely dangerous for Gwendolyn and ANY illness, no matter the severity, has the capacity to end Gwendolyn's...
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Gwendolyn Has a Cold and Ear Infection

October 15, 2009 by Victoria Strong
Gwendolyn has a cold and an ear infection. Right now it looks to be a mild-ish issue, but we are, of course, watching closely.

It started on Saturday with a random fever, but when a tooth broke through on Sunday our worries subsided, thinking the fever was simply teething. The only thing that gave...
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H1N1/Swine Flu—No Joke For Us

September 19, 2009 by Victoria Strong
I know we've all heard enough about the H1N1/swine flu on the news to know it is serious -- or potentially so. While the rest of the country flew into hyper mode last spring, Bill and I continued what we do every single day -- washing, sanitizing, and limiting exposure. And while parents discussed...
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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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Gwendolyn Update

September 13, 2009 by Bill Strong

Thank you to everyone for all of your thoughts and concerns. Gwendolyn's pediatrician, Dr. David Abbott, saw her on very short notice this afternoon -- yes, on a Saturday (he's amazing)! He didn't see or hear or feel anything obvious and that was a relief. It could be a multitude of factors...
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Concerned About Gwendolyn

September 12, 2009 by Bill Strong
We're pretty concerned about Gwendolyn. She has had several very, very scary choking episodes over the last few weeks while off bi-pap, is really struggling coming off bi-pap at all at this point, has had a few episodes of turning gray and dusky even while on bi-pap, has been lethargic, fussy, and...
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Serial Casting Round II and Construction

September 09, 2009 by Bill Strong
Never a dull moment in the Strong household...

Today, we took Gwendolyn to see her pediatric orthopedist, Dr. Early, for a checkup on how her serial casting was coming along. All good news. Her right ankle is looking very good and probably only needs another two weeks, at most, to get back to...

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Busy, Busy, Busy…

August 28, 2009 by Victoria Strong
We are busy...busy, busy, busy. On top of new casts, teething molars, entering into fall and the worry of the flu and the dreaded swine flu and what that means for Gwendolyn's life, we are both working around the clock and are pouring our hearts into Unite For The Cure. In fact, we are starting to...
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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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