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Posts tagged with: Parenting A Child With Disabilities

Our Preschooler! First Day of School Today!

October 18, 2010 by Victoria Strong

Gwendolyn is going to preschool. Shes going to preschool. PRESCHOOL! Today is the big day! Her very first day of school. Can you believe it?

So the logistics.

I am going with her. Its funny because this is never something Bill and I talked about. We never asked permission from anyone. We...

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Wedding Weekend in Napa

October 18, 2010 by Victoria Strong
This weekend we headed to the charming Napa Valley town Healdsburg for the wedding of one of Bills college roommates. We had an amazing time being with our best friends...but these types of events are always a little tough. For a long time we declined invitations, missed the important milestones of...
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Gwendolyn’s 3rd Birthday: Disneyland!

October 09, 2010 by Victoria Strong

Where do we even begin... Disneyland was an absolutely amazing experience for Gwendolyn (and us, too)!!! To see the imaginative world through the eyes of your child is incredible...for any parent...and for us, well, it was everything -- surreal!!!

There isn't really a ONE thing that stands out as...

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New York Times: Cap Lifts, and So Do Spirits

September 23, 2010 by Bill Strong

Anyone who knows us knows that raising broad awareness of SMA is something that we are pretty passionate about...just a wee bit. And. So. Well. We're pretty excited around here today. The New York Times ran a vignette on our family today about SMA and our perspective on the two pieces of the new...

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Little Star Love

September 03, 2010 by Victoria Strong
Gwendolyn is in love -- L.O.V.E. His name is Little Star and he is her mini horse best friend!!! Little Star moved to a new home over by the beach about three weeks ago and we have been going out to see him every chance we get. The best part is Gwendolyn completely controls everything.

We've been...

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Therapy and G’s Awesome Therapists

August 19, 2010 by Victoria Strong

Gwendolyn has therapy every day -- on some days twice. The therapy ranges from stretching to play and sometimes a combination of the two, but all of it allows Gwendolyn to experience things she could not without the help of some very special people.

Therapy for SMA children is a challenge. It's not...

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Off Kilter

August 13, 2010 by Victoria Strong

So I am having one of those weeks. I just feel spent, emotional, lump in the throat. Gwendolyn is doing okay -- not 100% yet -- but thank goodness not going down hill. We have had a few choking scares and I don't think I will ever get used to saving my daughter's life. And there is the anxiety of...

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Watching Gwendolyn Closely

August 10, 2010 by Victoria Strong

So Gwendolyn is fighting something. We hesitate to say she is sick because, well, she's smiling and insisting on doing things and going places, but she's just not quite right. No fever. No major lethargy (although a little more tired than usual). But she's not fully herself either. For several...

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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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Sweet, Small Victory: Handicap Sidewalk Ramps

July 20, 2010 by Bill Strong

We're celebrating a small, but very sweet victory in the Strong household. Back in December 2008, I posted about how inaccessible our neighborhood sidewalks are. I was pretty annoying about the whole thing with the City -- and then a little more annoying. Well persistence paid off! And while the...

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Power Chair—Get the G-Team Van

July 02, 2010 by Victoria Strong
The power chair is being ordered!!! Hazzah! After almost a year of preparation, trial and error, Jerry-rigging, tweaking, and lots of practice, practice, and more practice, we have found a system that works for Gwendolyn and she is ready to hit the road.

Gwendolyn's disabilities are such that we...

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Summer Fun

June 25, 2010 by Victoria Strong

The summer has just begun, but we have already been having lots of fun.

We've been having picnics with friends.

We've been teaching our princesses to dance.

We've been swinging in our new swing.

We've been taking Abby Cadabby for strolls.

We've been relishing time with old friends.

We've been reading...

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Dance Party USA

June 11, 2010 by Victoria Strong
So every evening as I wait for Bill to get home from work I find myself gazing longingly at the clock. Tick. Tock. Tick. Tock. Where is my reinforcement? I think this end of the day fade is true for most parents -- the kids are spent, parents are fried, but it's not quite time for bed. In the past...
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Yo Gabba at the SB Zoo

May 11, 2010 by Bill Strong

We were so excited that the Santa Barbara Zoo hosted a super special Yo Gabba Gabba event on Friday with the REAL Plex and Brobee characters in attendance! Gwendolyn LOVES Yo Gabba Gabba and we knew she would LOVE the opportunity to meet the cast. We danced to the fun music, hung out with friends,...

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Moving Forward

April 18, 2010 by Victoria Strong
We are doing okay. Gwendolyn is back to wanting books and songs and helicopter rides. But it is going to take us a good while to fully recover from that episode. Sheer minutes, perhaps seconds, rallied in our favor yesterday and it is difficult not to think of the what ifs.

This isn't the first...

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Easter Weekend

April 06, 2010 by Victoria Strong

We had a really wonderful Easter weekend. My dad and Bill's mom came up on Saturday and Gwendolyn loved it. She kept looking back and forth at them, listening to everything everyone was saying, and seemed extra content to have both Gramma and GrandPa around her. We had fun doing an Easter egg...

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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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Healing My Heart…

April 01, 2010 by Victoria Strong
It seems every few months Bill and I experience a time of heaviness...periods when SMA just becomes too much to bear. Days when the cruel reality of the disease takes over and skews the perspective we usually have.

Usually when I see Gwendolyn, I don't define her by her disease. This is surprising...
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Letting Go…

March 10, 2010 by Victoria Strong
Thank you all for the nice birthday wishes. Bill was sneaky and posted about it and put it on Facebook without me knowing and so I woke up surprised by all the lovely well wishes and birthday greetings all day. And it really made me feel special. I was being a bit quiet about my birthday this year...
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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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