Day 36 Daily Report

Duplicated from our CaringBridge site for permanent record here.

December 23, 2020, written by Mama

On Wednesday, Thomas experienced much wakefulness during the day, which is a wonderful thing. He could not yet hardly move, nor smile, nor speak, but he could move his head to track action in the room and he could watch us intently.

I decided he was awake enough to have me open his St. Nicholas gifts from nineteen days prior. I encouraged him to respond throughout, such as, "Look at this present! See here, it says To Thomas. If you want me to open this present for you, squeeze my hand!" And he would squeeze my hand ever so gently like a butterfly.

I swapped with Chris during the afternoon and went home to visit the children. Chris took an amazing-to-us little video of Thomas moving his hand and arm the most intentionally he had done so yet. 

I post a video here that I took later that evening: he was rubbing his stuffed animal giraffe gift purposefully!

Back at home, I used my four hours to shower, do three loads of laundry, pick up the downstairs, including rearranging some furniture, finish preparing the girls' room which is being given over to the new live-in nanny (!) who is moving in this weekend (!), and pushed the kids on the back yard swings. I was going to help my 12-year-old daughter, who has been tasked with this project, to put Christmas gifts in gift bags, but she had taken care of all of it. I have not bought a single gift and no stocking stuffers--stockings are a multi-generationally big deal in my family--because my brain just cannot focus on that. It turns out my daughter even dug around and found tiny things to fill the stockings! I told her that pragmatically, we should put the gifts out under the tree while I was at the house on the 23rd. It was the only time I could really help. She insisted no, the gifts would appear under the tree at midnight, just like they do every year. This was going to be done 'right' and she would see to it.

I was about to load the kids in the car to go swap back with Chris when a knock on the door revealed an amazing gift basket assembled by all our cul-de-sac neighbors! We were shocked and so moved at their support and generosity.

Then the children got to visit the neighbor's miniature dachshund puppy and there was much shrieking with joy to be heard.

This picture of adorable David (3) straight out of the bath is probably a nudge from my husband that he keeps reminding me to trim David's hair on one of my visits home.

I was back at PICU in time for a hospital dinner. Thomas was so actively moving his left hand! He still moves it only from the elbow downward, using his elbow as a fulcrum. He would reach his hand out into the air, grasp my hand, then move his hand to each of my outstretched fingers one at a time, squeezing each one. Then he would slowly move his hands through the air to caress his sloth and giraffe stuffed animals. It was truly exciting!