Friday, April 25, 2008

Our Night Time Routine...

I've been doing all this for so long that it is "Normal" to me. The other night, I started the nighttime routine while I had a friend visiting. At first, she pretended not to notice all the medical supplies I was hauling out and lining up on the table. After a couple of minutes of watching me, she finally stopped mid conversation and said " Do you do this EVERY NIGHT?"
I was kind of surprised that she was so shocked when I answered yes to her question, then I got thinking about it... This is what it takes to keep David, Ben and Caroline healthy, so of course I do it every night... I don't even think about it... but it is far from a normal bedtime routine!

David gets 2 pills and his Growth Hormone shot... his is purple. Then I give him the bottle of Eucerin to give his scars and skin graft sites a good coating so they don't get dry.. the burn scars and graft scars don't have oil glands so they get very dry if they aren't moisturized 2 times a day.
Ben gets 1 pill and his Growth Hormone shot... his is yellow. Then he gets Nasonex spray in his nose, his albuterol inhaler, and just before he gets into bed he gets hooked up to his C-Pap machine... I usually don't have this out on the table, I brought it out for the picture though because it is part of the nightly ritual.
Caroline is my easy one... she gets 1 pill and her Growth Hormone Shot... hers is green.

When we are done with all of this, it's time for the rest of the bedtime routine.. showers, PJ's, brushing teeth, etc.

It got me thinking last night as I got their meds ready, how nice it would be for all of us if we didn't have to do this every single night of their lives.. if bedtime could just be filled with end of the day things like bedtime stories and evening prayers. But as I tucked my little girl into bed last night, she wrapped her arms around my neck like she does every night and said
"Love you Mom"... That makes it all worth it.


Anonymous said...

Vicki- My name is Allan Karr, and I beleive I went to High School with you. You may remember me, however, I do not remember you. I had a Traumatic Brain Injury at the age of 18 from being hit by a Drunk Driver, and have almost no recolective memory before that age. I am almost completely healed except for the the Memory thing. I am not telling you this to make you feel sorry for me, only to let you know that I can somewhat relate (I stress SOMEWHAT) becuase I don't think I could ever survive what you and your family have gone through...I applaud you and your family's efforts!!
Allan K.

Anonymous said...


Thank you for this fantastic family page. I am in tears as I write because as I you know I have a 2 1/2 year old daughter with PWS and severe scoliosis. Your right it does become automatic because it is what we do for our children. Sharing your stories and all of your children's achievements confirms that our (PWS) children can reach their goals with our love and support. Most folks don't understand daily life with a child with PWS - Thanks for providing a window for people to see....

Love and prayers ~ Tracey Knight