One year we went sock skating on the hardwood floor on Christmas Eve. We all got fuzzy socks that slide remarkably well. Shannon was pretty fantastic at it. She's always loved socks, all kinds of socks. These days, she's traded her fun Alice in Wonderland and other Disney socks for sexy white compression socks. And if those didn't attract enough attention, after that her legs are wrapped in ace bandages to help with her blood pressure. I learned how to wrap up those cute feet today while I was at the hospital with Shannon for family training.
I also got to learn how to do the dreaded Quad Cough. It still needs some work on my part before I can help Shannon make her coughs productive, but I wasn't as awful as I thought it would be. It's still a little terrifying. I told Shannon I was afraid I’d hurt her stomach while I pushed on it, but she reminded me that she can't feel it. Still. A little terrifying shoving my hand up into her abdomen trying to help her cough up a lung. Now I know why I wear a face shield. :)
Shannon has always loved creating things, and she loves to work with her hands. As you'll recall, a couple of days ago she also wanted to do something else with her hands. She was pretty upset and wanted to burn off some energy- by throwing something. Well her Art Therapist came through and provided an outlet. Shannon threw paint soaked paper towels at the paper while her super brave therapist held it up for her. It took her a couple of days to complete, but I think it looks really fun!
Shannon also transferred from her bed to her manual chair and back today. That was fun to watch! And... Shannon’s super big news for today: She is no longer doing overnight tube feedings!! She’s been getting enough food into her by mouth, so they aren’t worried about that side of her nutrition. She will still have the feeding peg for a while longer to receive medications, but she’s so excited to have her night feeding over. They also decided to go with Shannon’s high school weight as their goal weight for her. Which means she only has 12 pounds to gain instead of 17. If only I could give her some my my weight....then both of our problems would be over!
https://youtu.be/gj7rsbajPuc
Shannon's congestion is really making life miserable for her lately, so please include in your prayers Shannon being able to strengthen her cough and overcome her congestion, for her core muscles to continue to get stronger, for her blood pressure to continue to improve, and for her spinal cord to heal. Thank you for all of your concern and prayers for Shannon.
The meme from Shannon's countdown calendar today! She doesn't have this problem currently. She had almost every therapy today! She's apparently too well loved, and it was exhausting.
Shannon is struggling with all that's required of her from therapies, and just the overall toll that this whole situation has on her. There are days she wants to just give up, but most days she's taking this all by storm. Today, she reminded me of this quote:
"Let's go kick some honey buns!" Mushu, Disney-Mulan
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