Day 66: Out of Bed and Out of Doors!

Duplicated on our CaringBridge site for permanent record here.

January 22, 2021, written by Mama

Fair warning: I took several videos today of the quality I call "grandparent videos," meaning that probably only fawning grandparents will actually want to watch two minutes of our sweet boy placing puzzles pieces on the tray.

Today, Mama did many activities with Thomas plus he had appointments with Occupational Therapy, Speech Therapy, Art Therapy, Child Life, and Physical Therapy. Keep scrolling because after 66 days, Thomas got to get out of bed and go outside!

For the first time, Thomas can manipulate Woody with one hand and pull the cord with the other hand, all without Mama's help.

Thomas is being able to complete chunky, wooden puzzles.

Thomas was interested in coloring his space book, so I was hunting for something fat and easy for him to grip when he requested the coloring pencils. I didn't want to be discouraging, nor falsely optimistic, so I said, "Well, that's fine to try, honey, but I want you to know that your hands probably cannot stay in the lines and I don't want you to get upset." Well, the child used a perfect pencil grip and stayed inside the lines!

In the biggest news of the day, after 66 days immobilized in bed, Thomas was transferred out of bed and into a chair today! This was a big accomplishment and even just sitting still in the chair (with an abdominal brace and a seat belt) is very fatiguing.

He had no extra energy for a smile, but I asked if he was nervous or scared and he said no . . . "but my legs are cold. I want a blanket and my hat."

While in the chair, we worked on a puzzle and then built some Legos.

Then his Art Therapist showed up and, per Tom's request, he painted a purple octopus. He painted the smiley face, he painted almost all the purple body (staying inside the lines), and only at the end did his hand fatigue, so he asked his therapist to do some team painting in which she finished for him. She cut it out and added the tentacles for him.

After all that fun, plus numerous doctor's examinations, in just three hours, this sweet boy needed a nap! Then Daddy arrived for an afternoon visit just as Child Life showed up to read a book about Sea Creatures. Chris brought me some food and Thomas glimpsed me grabbing a snack, which brought forth a flood of anguish from him. He was crying so hard about wanting to "eat food in my mouth!" He actually did NOT want to converse and he said no, he did NOT want to see the kinds of foods he is receiving (TPN and J tube formula), so what the therapist and I discerned is that he just wanted to cry. I knelt by the bed and cried with him and we just mingled our tears.

Then Physical Therapy showed up and astonished us by suggesting he get back in his chair for a second time that day and this time to go wheeling down the hallways! This time, Thomas took some convincing and he expressed fears showing a lot of vulnerability. He was very afraid of being cold, getting lost, and being outside of his bed. Finally we won him over because Child Life offered to set up a treasure hunt of brand new matchbox cars that he would get to keep up on the rooftop garden, of all places.

This photo is a prized possession for us! Chris and I are together--something that has rarely happened for more than a few minutes in passing--and after 66 days, our sweet boy is under the blue sky in the fresh air.

Our sweet pea felt pretty vulnerable and nervous about the adventure. He requested to get back in his safe bed!

He finished out his day full-to-the-brim wanting to play Doctor with Curious George and I think he is fading fast for bedtime . . . but I will be heading home to see my other chickadees! He and Daddy are going to have a spend-the-night.