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Posts tagged with: Newly Diagnosed

New Awesome SMA Resouce: InsideSMA

February 13, 2011 by Victoria Strong

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...

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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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Day of Diagnosis

March 31, 2009 by Victoria Strong
I told myself I never wanted to remember this day. I wanted to only commemorate positive dates in Gwendolyn's life. Yet, somehow, this day has managed to cement itself in my brain. This day last year forever changed my life -- FOREVER! I was actually making a video of Gwendolyn before I received...
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March 31, 2008 - a day to forget…

March 30, 2009 by Bill Strong
March 31, 2008 - without a doubt, the worst day of my entire life. The day my cell phone rang at work and I heard Victoria's shaky voice mutter words that would confirm our worst nightmare. She didn't even need to say the words, I could sense what she had learned -- Gwendolyn's DNA test was...
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FSMA Releases Newly Diagnosed SMA1 Care Booklet

December 29, 2008 by Bill Strong
Last week, Families of SMA (FSMA) released a new booklet aimed at providing parents and/or caregivers of newly diagnosed SMA Type 1 infants with help in deciding respiratory care options. In our experience with Gwendolyn, dealing with the reality of the diagnosis was difficult enough, but the lack...
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SMASpace.com - a great resource

December 04, 2008 by Bill Strong
I joined SMASpace.com about a month ago and have found it to be a very useful forum/network for those impacted by SMA. SMASpace was created by Nate Lee, father to three wonderful girls: Annabelle (SMA free), Linnea (forever 13 months - SMA1), and Emily (3yrs old - SMA 1). Thank you Nate for...
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A typical day in the life of Gwendolyn

July 01, 2008 by Bill Strong

Gwendolyn is a very, very busy little girl. Several times a week Gwendolyn has nurses and therapists (physical, occupational, and speech) visit her but besides those visits, our treks to Gwendolyn's pediatrician every other week, and visits from family and friends this is what a typical day in...

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Gwendolyn's Respiratory Treatment Regimen

June 25, 2008 by Bill Strong

Although the core of our philosophy on Gwendolyn's care is based on several synergistic factors, in our opinion her routine respiratory treatment regimen is probably the most important. When Gwendolyn is in good respiratory health we religiously perform this regimen five times a day; four times...

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Gwendolyn's machines

June 09, 2008 by Bill Strong

We've had a lot of questions about the machines that Gwendolyn is using to keep her in tip-top health and provide her, in our opinion, the best quality of life possible through the progression of her disease. So, below is a picture of her machine cart and we've described each of them below the...

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Letter to Gwendolyn's caretakers

June 01, 2008 by Bill Strong
This is a letter that Victoria and I wrote to provide to Gwendolyn's night nurses and other caretakers that come into our home to introduce them to our precious Gwendolyn, her disease, her needs, and our wishes.

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Hello and welcome to our home. We wish we were meeting you under different...
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Spinal Muscular Atrophy Diagnosis

April 03, 2008 by Bill Strong

Dear Friends,

We apologize in advance for sending this news via email but, in all honesty, it's the only way we can do it right now. As parents, we have learned the worst: Gwendolyn's illness is terminal. This is the most difficult news we have ever had to face and now share with those who...

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