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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 her life is like:

  • 7:00am ~ the night nurse leaves and we get up to start Gwendolyn's day
  • 7:30am-8:00am ~ we wake Gwendolyn up (the smile on her face is priceless when she wakes up); we administer respiratory treatment #1 for the day; we take her off of bi-pap
  • 8:00am-9:00am ~ we move Gwendolyn and her machine cart from her bedroom to the family room for the day; feeding time #1 (100cc's fed over 1 hour via g-tube)
  • 9:00am-10:30am ~ this is usually playtime; stretching and massage to keep her joints and muscles healthy; bath time (aka water therapy) every other day (which she absolutely loves!!!)
  • 10:30am-11:30am ~ we usually put her back on bi-pap; nap time if we can get her to take one smile
  • 11:30am-12:00pm ~ we take her off of bi-pap; we administer respiratory treatment #2
  • 12:00pm-1:00pm ~ feeding time #2 (100cc's fed over 1 hour via g-tube)
  • 1:00pm-2:00pm ~ this is usually when nurses or therapists come to check up on Gwendolyn and give her therapy (2-5 times per week); we put her back on bi-pap; or sometimes this is playtime smile
  • 2:00pm-3:30pm ~ we take her off of bi-pap; playtime; stretching and massage
  • 3:30pm-4:00pm ~ we administer respiratory treatment #3
  • 4:00pm-5:00pm ~ feeding time #3 (100cc's fed over 1 hour via g-tube)
  • 5:00pm-6:00pm ~ we put her back on bi-pap; nap time
  • 6:00pm-7:30pm ~ we take her off of bi-pap; playtime; stretching and massage
  • 7:30pm-8:00pm ~ we administer respiratory treatment #4
  • 8:00pm ~ we put her back on bi-pap; bedtime
  • 8:00pm-9:00pm ~ feeding time #4 (100cc's fed over 1 hour via g-tube)
  • 10:00pm ~ feeding time #5 (400cc's fed over 9 hours -- all night -- via g-tube)
  • 10:30pm ~ we transfer Gwendolyn and her machine cart from the family room to her bedroom for the night and get her settled for the night
  • 11:00pm ~ one of Gwendolyn's night nurses arrives, we give a report of the day, and get things ready for tomorrow
  • 11:00pm-7:00am ~ the night nurse monitors Gwendolyn, suctioning and rotating her sleeping position as needed throughout the night
  • 2:00am ~ we administer respiratory treatment #5

UPDATE (March 16, 2009): As Gwendolyn has grown and regained strength, we have altered the above routine a little bit. We now do three respiratory treatments a day: morning, noon, and before bed. At the slightest concern, however, we add treatments back in. She also now takes only one nap a day and goes to bed by 7:00pm. She does not need as much suctioning now either (the drug Robinul has helped), but someone is with her at all times because she is still prone to sudden choking.

Cough Assist. This is her cough assist treatment that is part of her daily respiratory treatments. She now does this, along with other parts of her respiratory treatment, twice a day when healthy, more if needed. 

Talk About It

[...] away before they can enter school or many of our daily lives, leaving parents to look back at the tragic busyness of their last two years and wonder whether anything more could have been done.  Yet there�s [...]
Posted by Gwendolyn Strong « ya voi on 2010-06-16 11:11:10
This is my first time to your site. I actually came by from A Hen's Nest for your giveaway, but had to first read about SMA, which I knew nothing about. Thanks for sharing and explaining this. Your situation and your daughter have touched my heart.
Posted by Petula on 2011-04-30 14:23:04

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