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Posts tagged with: Gwendolyn

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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Kindness

August 27, 2010 by Bill Strong
In all of the sadness and the grief that comes with SMA...in all of the frustration with having to fight for so much while sometimes barely holding on...in all of the years we've now lived with this disease -- the kindness of others continually amazes us and leaves us simply speechless. Sometimes...
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Fun Visit With Family

August 26, 2010 by Victoria Strong

We had so much fun visiting with my sister, brother-in-law, and nephews...and Grandpa came over, too. They are the best and there is nothing like laughing the night away with them. And Gwendolyn loves being read to, smothered with hugs and cuddles, kissed, tickled, and taken on fun adventures with...

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The Cousins Have Arrived!

August 20, 2010 by Victoria Strong
The cousins and Aunt Elizabeth and Uncle Chad arrived yesterday!!! And we are having an absolute blast already! We love them!

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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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Feeling Back To Normal…Almost

August 16, 2010 by Victoria Strong
Well, we are feeling back to normal...almost. Each time we have some sort of misstep, it takes a while to recover. But with Gwendolyn doing so well, we are feeling the spring in our step once again. And thank goodness (hallelujah!) she is feeling so much better. Her secretions have thinned out (be...
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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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Holding Steady

August 12, 2010 by Victoria Strong

Just wanted to post an update. Gwendolyn is stable and the additional nebulizing treatments with Mucamyst (or as our friend, Jennifer, calls it = Mucus Get Out) seems to be really helping break up Mr. Sticky. It is an odd thing because Gwendolyn doesn't seem full blown sick -- no fever, no runny...

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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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Our Counting Queen

August 08, 2010 by Victoria Strong
Gwendolyn loves to count everything -- and I mean everything. How many stairs we go up, how many we go down. How many dolls on her bed, how many cars on the street. How many of just about everything we see. And oh boy counting can save the day when I have a fussy preschooler on my hands! Going down...
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Big Girl Room For Our Sweet Big Girl

August 04, 2010 by Victoria Strong
The "Big Girl" room is all decorated! And Gwendolyn absolutely loves it! It's amazing to me how much she expresses without uttering a single word -- and it is full approval and sheer pride. And she should be proud of herself. When we started this SMA journey, a big girl room, a power chair,...
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New Snuggly Friends

July 30, 2010 by Victoria Strong
We have quite a few new snuggly friends lately from different special people in our lives and Gwendolyn is enjoying each of them completely. Gwendolyn always names each new doll and she will not simply accept the first name we throw out...that is unless it strikes her fancy. And once a doll is...
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Special Visitor: The SMA Fighting DIVA!!!

July 29, 2010 by Victoria Strong

We had a very special visitor this week -- Ms. Lauren Lundy O'Connor aka SMA Getter aka Team Run For Owen aka Supreme Awesomeness!!! We adore Lauren! You may remember her from here or here. Or you may remember that in May Lauren ran the New Jersey Marathon in honor of Gwendolyn. Lauren is...

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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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Fancy Gwendolyn

July 22, 2010 by Victoria Strong
Yes...I'm very glamorous with my fancy nails... and very proud of myself. smile And, yes, those are rhinestones...and a music note...and a butterfly...and glitter polish. Want me to paint yours?

Thanks Aunt Elizabeth for keeping me so sparkly! You are the best!!!
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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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summer

July 18, 2010 by Victoria Strong
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Missing Grandpa Harry

July 16, 2010 by Victoria Strong
I'm home from visiting Grandpa Harry. I had a wonderful time being with him and I feel more whole for just spending a few days being next to him. Harry is one of the most influential people in my life. He loves me and dotes on me like any grandparent does, but our bond is so much more. Harry "gets"...
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Visiting Grandpa Harry

July 10, 2010 by Victoria Strong

I'm in Mississippi. Yes, M.I.S.S.I.S.S.I.P.P.I. -- the land of quadruple i's and s's and home to Grandpa Harry. My grandpa...my 105 year old grandpa! 1.0.5!!! This was a last minute trip, spur of the moment, as in I booked it and got on a plane in a matter of days. Harry is okay -- I just missed...

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Little Miss Firecracker

July 05, 2010 by Victoria Strong
We had a really fun weekend and a great 4th of July.

1. It felt really nice to just be together. I don't know why because we are together quite a lot, but this weekend seemed a little slower...a little less doing and just being -- and I loved it.

2. Bill got to go golfing on Saturday -- a Father's...

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