It’s been several eventful weeks for the boys since the last update.
Jack continues to work on his spoken and signed language. He’s recently picked up the sign for “sunshine”, “chicken,” “song/sing” and “again”. He is learning his signed alphabet and can very clearly make the hand-shapes for A, D, E, K, L, O, S, T, V, and W. He’s also using his spoken voice a bit more intentionally these days. He can now say (though it is not very intelligible) “ball”, “bye bye”, “hi”, “daddy”, and “boy”.
He had the opportunity to attend summer school for about six weeks in June/July, which just wrapped up this week. He just loves school- loves his teachers and friends, and especially the many opportunities for constructive play. Here are a few pictures that one of the nurses who accompanies him at school took for us, to document this wonderfully rich environment.
Heading off to school on the bus, like a big boy:
The sunny courtyard, complete with bubbles, water play, and a vegetable garden that the kids can tend:
Jack at song time, with his “twinkle twinkle little star” prop:
We are so sad to say goodbye to school for a little while, until classes resume on September 8th. During the hiatus, John and I are working on getting nursing coverage for an additional school day covered by Medicaid. I truly hope it will work out!
Sadly, Jack missed some school recently due to another hospitalization. Thankfully, this one was not nearly as dramatic as previous, recent hospitalizations, with no emergency surgeries required… though it did start with our first, panicky midnight ambulance ride. Our night nurse called us out of sleep concerned that Jack was having another seizure. We grabbed a phone and recorded the event so that a neurologist could see it. Jack was trembling hard, but I noticed very pronounced goosebumps, and he was responsive to us, so I wasn’t sure he was seizing. We didn’t want to chance it, so we rushed via ambulance to the emergency room. As soon as Jack got to the ER, a 103-degree fever spiked up, and an abnormal chest x-ray showed us the cause of the fevers- a minor pneumonia.
Though it was minor, 103-degree fevers sure are awful, and Jack was pretty sick there for a few days. He spent about three days recovering with lots of TLC from some of his old friends from his rehab phase. Lots of his new signs emerged during this period, while he didn’t have much else to do but practice. We also discovered a good way to beat the terror of a hospital stay… get a stuffed animal, and make it suffer through all the same procedures that the patient must suffer. Inhalers, stethoscopes, blood pressure readings, probes… any time someone came in to tend to Jack, we tended to his doggie immediately thereafter. A good strategy, I’d say! (At least it kept us busy.)
We’ve been out of the hospital now a little less than a week, and Jack is doing well. His current favorite activity is trying to hop, which he can’t do, as one side is much weaker and less coordinated than the other. So instead of hopping, he tends to look like superman going from a crouch to tip-toes- just barely lifting one foot off the ground to take off into the sky, one fist raised up high. We love it. It’s just such a Jack pose.
Sam is always at risk for missing out on lots of things because of the logistics that surround his brother’s care. So, this summer, I wanted to make a commitment to getting him on at least one trip to New Hampshire, where my parents have now moved. I spent weeks dreading a 9-hour journey with a toddler. But my little blond trooper did not disappoint! Here he is at the rest area enjoying a treat for his amazing behavior during the first leg of the journey.
We talked a lot about cars, diggers, trucks and big bridges during the drive, and we sang many hours of Sesame Street songs. He napped a little bit, but only really fussed during the last 15 minutes of the trip. It was great.
Once there, Sam got to go in a canoe, swim in a lake, eat chocolate cake, and just enjoy himself. He was able to have a long visit with my grandparents as well as with my folks. He’s still talking about the trip, and it’s easy to see why!
Here’s Sam on his first day of the trip, just after scaling a pretty intimidating “mountain” for a little guy:
And here’s Sam enjoying the lake. I especially love this picture as it gives a sense of what the world must look like to a two-year-old. A forest of big people!
Fall promises to be very busy for me at work, so I’m hopeful that the eventful spring and summer that we’ve had will mellow into a pretty peaceful fall. We’ll see!