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Posts tagged with: Sma Tips

Respiratory treatments and constipation

August 16, 2008 by Bill Strong
One of the things we spoke to Gwendolyn's pulmonologist, Dr. Yuan, at length about was the number of respiratory treatments we should be giving on a daily basis. Since Gwendolyn's lung collapsed in May, we have religiously been giving her five treatments a day; four during the day and one in the...
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Swing time

August 13, 2008 by Bill Strong

Gwendolyn loves the swing that Elena and her dad (thank you guys!!!)
put up in a tree in our front yard. Almost as much as Gramma loved
pushing her in it today.
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Update from Stanford

August 08, 2008 by Bill Strong

We've had a very busy, but very productive week meeting with

Gwendolyn's doctors up at Stanford. We've walked more in the last five

days than we have in months and it was nice to walk around the

Stanford campus and explore a bit. It's really beautiful up here; much

different from what I was taught as a...

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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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Happy 9 Month Birthday!!!

July 05, 2008 by Bill Strong
We celebrated Gwendolyn's 9 month birthday yesterday. Gwendolyn had a great day -- so much so that she played all day with Gramma, skipped most of her naps, and then passed out for the night and missed the fireworks show smile We've been keeping a close eye on her over the last week given the...
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Immunizations and Power Outages

July 03, 2008 by Bill Strong
It was an eventful day in the Strong household yesterday.

Gwendolyn had her third set of immunizations. She's now completely up to date with her shots and is on shot hiatus for several months now. I'm sure she's very happy about that smile She seems to be doing relatively well thus far after her shots...
...
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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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BatteryGeek.net = very good; Quinny stroller = not so good

June 19, 2008 by Bill Strong
In order for us to go outside of the house we have to take most of Gwendolyn's machines with us -- bi-pap, suction, pulse ox, oxygen, and sometimes her feeding machine. Most of the machines work on battery but the most important machine, Gwendolyn's bi-pap, does not. So we have to carry a battery...
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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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A great week

June 02, 2008 by Bill Strong



We had a great week last week with Gwendolyn. Her strength has improved remarkably and Victoria and I feel as if she is stronger than she has been since we left for Stanford over two months ago. She's coming off of her bi-pap (breathing machine) for many hours a day and is completely off of oxygen...
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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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