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Posts tagged with: Spinal Muscular Atrophy

Trying out a new bi-pap mask

July 16, 2008 by Bill Strong
We're easing Gwendolyn into a new bi-pap mask little by little. The mask and headgear that she has been using for months is perfect, but we're having trouble finding a replacement for it so we're testing this one just in case something happens to her favorite mask. This mask is a Respironics...
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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 g-tube

June 21, 2008 by Bill Strong
Pictured below is Gwendolyn's Mic-Key button (gastric feeding tube or g-tube). Since Gwendolyn is at extremely high risk of aspiration and has lost her ability to swallow, the Mic-Key button is extremely important as it allows us to administer her feeds and give her liquid medication, etc. directly...
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A bit on edge earlier this week

June 13, 2008 by Bill Strong
On Sunday night and Monday Gwendolyn was running a fever off and on. She also seemed a bit fussy, which is very unusual for her, and we noticed that her secretions were a bit thicker than normal. On Monday night she was sleeping on the couch next to Victoria and me and her oxygen stats dropped...
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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.

=====

Hello and welcome to our home. We wish we were meeting you under different...
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Home sweet home

May 25, 2008 by Bill Strong
Victoria, Gwendolyn, and I are glad to be back at home after spending the past 10 days in the hospital. Gwendolyn's right lung is moving air again and is more or less back to where it was before it collapsed. Her strength through this latest episode has been miraculous and the doctors were amazed...
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Cottage Hospital Update

May 15, 2008 by Bill Strong
We received a little good news this morning. Gwendolyn's early morning x-ray showed a slight improvement in the upper lobe of her right lung. She seemed a bit less distressed last night and this morning and Victoria and I have noticed a lot of thick mucus starting to come up from the treatments we...
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Back in the hospital

May 13, 2008 by Bill Strong
Dear Friends:

We hope this email finds you well. We wanted to give you all an update on Gwendolyn's condition.

In short, it has been a very difficult, trying month for all of us. The team of specialists at Stanford provided us a lot of knowledge, a plan, and some empowerment with that plan, but our...
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Queen Gwendolyn's Maiden Voyage

May 07, 2008 by Bill Strong
I'd be lying if I told you Victoria and I weren't on egg shells the whole voyage to the doctor's office yesterday but one very, very important thing I can assure you -- Queen Gwendolyn thoroughly enjoyed being escorted in her shiny cherry red wagon that the Families of SMA Foundation sent us and...
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Surgery Update

April 24, 2008 by Bill Strong


Hi All:

We just wanted to let everyone know that Gwendolyn's MIC-key button g-tube (feeding tube) surgery went extremely smoothly yesterday. Her recovery from surgery has progressed much more quickly than the doctors had anticipated and she is already out of the ICU, off of the ventilator,...

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Stanford Update (2)

April 17, 2008 by Bill Strong


We've had a very productive week meeting with a number of SMA specialists at Stanford and have learned a ton about how to provide Gwendolyn with the best quality of life possible through this journey. Gwendolyn was scheduled to have surgery tomorrow to implant a very important feeding tube in...

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Stanford Update

April 17, 2008 by Bill Strong

We thought we would send a quick update of the latest events -- and there are quite a few. Gwendolyn stopped breathing yesterday, but thankfully we were across the street from the emergency room. She is stable now, although dehydrated and exhausted. We were transferred to a pediatric ward last...

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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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Update

January 01, 2008 by Bill Strong

Hi Everyone:

Unfortunately we are still in the hospital with Gwendolyn and are still not 100% certain what type of neuromuscular disease she is suffering from. The good news is that she is continuing to show slight signs of improvement in both muscle movement and direct feeding every day. The not so...
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