4/21/18 - The "Q" Word

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They don't use the "Q" word at my hospital too often, so I won't use it here either. I have learned that people think that it's an easy way to jinx the day and turn it to chaos. My day was just that today though...the "Q" word. I had a very sweet nurse friend caring for me. Mom called in the AM to check on me, like usual, and asked if I could be sat up again today. I don't usually get to do too much extra on the weekends because my therapy ladies aren't here, but she was all for it. That made me so happy. When my therapy girlfriends are gone for the weekend, I don't always get to do much extra. I'm a complicated little guy, you see? I have lots of tubes and cords that make moving and positioning me tricky. Most of my nursing team seem to be very cautious about doing new things with me like sitting up when my therapy girls aren't here. I understand that...They want to keep me very safe. Better safe than sorry. So, getting the opportunity to get set up again with my pillow was such a wonderful treat. I very much enjoy it. I think it may be my new favorite thing. I sat up a long while today, Mom read to me and I snoozed. Just a "Q" word day. I didn't need any PRN's (that means extra medicines in nurse words) today. That made Mom very happy. I just did good today. I'm thankful for days like this. Please pray that I can stay strong and continue my "Q" word days. They are nice. 

I wanted to share with you something I enjoyed today while Mom was reading to me from the letters you guys sent me...this one stood out and we really thought it was a nice way to think about things. Very interesting. It went like this..."Hi Heath, Today i would like to tell you a story. A very long time ago this country had areas that were wild and no one lived in those places. But many brave people, we will call them pioneers wanted a better life for themselves and their children. They bought wagons and horses and joined what we now know were wagon trains. It was scary and a huge unknown, but at night they would circle the wagons to protect and support each other from danger. Today, the unknown is still scary. You Mommy and Daddy have circled the wagons for you, with excellent medical care and people who pray and hold you in their thoughts, they are all protecting you. So dear Heath, please know the wagons are circled for you. Blessings and prayers for Peace and strength, Ellen". Thank you for that. We truly appreciate that people like you spend so much time thinking about and praying for me. I'm still here, still fighting the good fight. Praying for my heart gift to come soon and praying for my donors family too. Hugs and Love, Heath

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