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Gwendolyn (and Bill…and now Victoria) Update

October 16, 2009 by Bill Strong
The past few days have been tough to say the least. Gwendolyn's ear infection/cold is still hanging around and that is EXTREMELY and constantly stressful for us -- 24/7. Any illness is extremely dangerous for Gwendolyn and ANY illness, no matter the severity, has the capacity to end Gwendolyn's life. Blunt? Yes. But it truly is that tragically simple.

This cold seems to be on the milder side so far and dry in nature as opposed to gunky and junky -- which is a good thing. Nevertheless, Gwendolyn doesn't have the physical capacity to cough. So, when she gets that little nagging tickle in her dry throat and needs to cough -- she can't. Which creates more secretions in her throat, escalates her heart rate, and is very scary for her. And since she doesn't have the physical capacity to swallow either, the secretions gather in her throat, fill her airway, and she chokes, gasping for air. These episodes come on and escalate very quickly and tend to be silent so someone needs to be literally sitting by her side 24/7 to watch for her choking and be ready to suction her or use the Cough Assist machine to force her to cough and keep whatever is in her throat from aspirating into her lungs.

There is no way to describe it accurately and let me tell you, no matter how many times we save our daughter's life there is no way you ever, ever, ever get used to seeing your child silently choke on their secretions at any second...of any moment...of any hour...of any day, gasping for air, and glaring at you with wide, piercing eyes pleading for you to help them take a breath again. This is our reality with Gwendolyn's SMA Type I. And, it is pure torture.

We're hopeful that Gwendolyn will turn a corner soon and that she will start feeling better. Every morning it seems like things are getting better, but throughout the day she gets progressively worse and back to square one. She's also not napping due to the choking episodes and she's not sleeping well which all have an impact on her energy and her ability to fight these things off -- breathing for Gwendolyn while 100% healthy is unfathomably difficult, but breathing while fighting something and not being able to sleep seems almost impossible for her at times. She slept better last night than the night before and hopefully tonight she'll be able to get some more rest...

And, I'm sick with the same cold and now Victoria is sick as well. I'm actually feeling a bit better today, but Victoria seems to be just starting her bout with the cold and I know that the added stress is not helping either of us.

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