The roller coaster goes up, and then it goes down… but let’s stop and enjoy the “up” moments.
Jack’s pain seems to have finally subsided a bit. When you are ill or recovering, the potent cocktail of time and sleep works every time. Jack and I have just spent an intoxicatingly wonderful day together. Despite my lofty pre-tumor goal of no “screen time” for the boys until two years of age, Jack and I spent much of the morning watching relaxation videos through the hospital’s TV network. We took a gondola ride in Venice together, watched a flag wave over Mexico City, watched the boats pull into a marina in Stockholm, and we people-watched on a busy intersection in Tokyo. Jack put up with Mommy’s narration of what was going on as I pointed out planes, colors, and various things. I drank my coffee, Jack ran his fingers over my arm and played with the fuzz on the head of his red cardinal.
That would have been enough to have made my day, but then we had a great visit with the speech therapist, who commented on the improvements that she saw in his ability to grip with his jaw, to move his head and eyes out of his favored position in order to follow my voice, and even in the level of “droopiness” of the right side of his face.
We had a two-hour cuddle-fest in a big armchair, and we sang lots of Jack’s favorite songs. Jack touched my face and gave me a handful of those weak, but inexpressibly beautiful half-smiles. Jack didn’t need any pain medication outside of his regularly scheduled doses today (which is a huge step forward).
When feeling so excited, it is hard not to let our hopes soar too high on a day like today. I try so hard not to project and cling to an image of Jack’s future that he may never be able to accomplish, given all of his new limitations. Yet, knowing that Jack has been able to recognize us, recognize some of the silly things we used to do, to move his now-uncoordinated hands with some purpose, and to respond to some of the patterns of activity around him is ridiculously encouraging and leaves me almost giddy with happiness.
There is already talk of Jack being moved out of the PICU as early as tomorrow (provided he stays as comfortable and happy as he has been today, and provided there is an available bed in 2A- the rehab unit that Jack will be heading to next.) I have to say, after another day of improvements like this, I’ll feel confident leaving the PICU.
Let’s hope the night doesn’t bring any surprises….