Today was Jack’s follow up MRI. We are again hoping for a clean scan and no more signs of either hydrocephalus or the tumor. Jack seems to have forgotten all of his hospital manners– he fought like heck today and didn’t want any of those scary nurses and doctors doing anything to him!
Since my last update, much has been going on for Jack and for the rest of us, too!
Jack was recently evaluated for language skills as part of the follow up to his hearing loss diagnosis. His receptive language skills were judged to be “age appropriate”. This feels like a stunning victory to us! Jack listens, responds to his name, finds humor in things, plays and seeks to engage with others. He responds to commands such as “give Sam a hug,” or “show me the doggie”. He clicks his tongue or makes gurgly coos to get our attention when he needs help, and he points at pictures and then to the corresponding real-life object in order to label and categorize. He spontaneously waves “bye bye” to people.
Jack now has six signs under his belt: Please, Wash, Kitty, Daddy, Doggie, More, and Phone. He’s made up a sign for “swing” (he points and then rocks back and forth in pantomime). He’s working hard on the signs for “mommy”, “baby”, and “open” and “close”, but hasn’t quite mastered them yet. I really enjoy learning sign language and challenging myself to incorporate as many signs into my reading aloud or singing songs with the kids as possible. It’s fun to learn something new in the same way and at the same time as the kids.
Jack isn’t walking yet- progress in this area is slow. However, he is now able to wobble-walk for considerable distances with just one hand being held for support. I’ve also caught him standing independently for a few seconds once or twice. I don’t think that walking is far away, now, though he will have to really work on his balance before he is able to get there.
The most exciting thing to watch now is the emerging relationship between Jack and Sam. They are begining to play together more and seem to find their game of under-the-dining-room-table peekaboo to be the most hillarious pasttime of all. They can also be found pushing one another on a little toy plane through the house. When Sam is being pushed by Jack, who uses the toy as a walker, you can hear Sam chiming “Thank you Jack” as they go. (Though it sounds more like “gank goo Gack”.) They occasionally steal from one another, grab each others’ things and get angry when one gets his way and the other doesn’t, of course. But Sam says hello and goodbye to Jack every morning, and Jack (who doesn’t quite understand that one has to use one’s arms to give a proper hug) lays his head on Sam’s chest affectionately when he sees his brother. When one of the boys takes a tumble, the other is often there with a hug, a gentle head-pat or a toy to offer. I’m really proud that they seem so empathetic toward each other- at least for now!
Sam’s language capabilities continue to explode. He asks simple questions like “Mommy go?” parrots every language-esque sound he encounters, and his word count is currently somewhere over eighty. Some of our favorite words and phrases that Sam uses right now include Octopus (“ah-boo-dis”), Bicycle (“Bi-tic-oh”), Noodles (“Nu-nulls”), and probably our ultimate favorite: Cold (pronounced “CoOoOo” with full, shivery vibrato).
Sam has also picked up some new names: Tucker (“Tah-coo”) and Rachel (“Ba-tcho”), which of course refers to John’s brother and his wife, who have recently relocated to Delaware! It feels great to have family in the area. Right now, as they get settled into new jobs, etc., they are staying with us which has been a great help. Jack has an enormous crush on Rachel, and plays a shy game of hide-and-seek which is really cool.
We have some further check ups with Oncology later this week to learn the results of our MRI, and on Monday of next week a full meeting with all of Jack’s therapists to learn how he is faring. I promise I will try my very best to get back to you, my dear friends and readers, with an update as soon as possible As always, thank you for holding Jack in your hearts!