The Grotti family had a really fantastic Mother’s Day celebration last weekend, which included a hike, ice cream, and planting new lilacs in the yard. Since I had been away at a conference for a few days prior, the kids were much more lovey than usual, and I think we all had a pretty tremendous time.
Following Mother’s Day, we had numerous visits to the hospital for a combination of sick visits with Pulmonology, (Jack is fighting another virus and has been getting fevers pretty constantly for over a week) and follow ups. Medically, there’s some positive news to share on several fronts. Some time ago, Dr. Chidekel (Pulmonology) had given us the green light to place Jack on CPAP at nights rather than continuing with a breath rate on his vent. With the exception of his most recent bout of respiratory illness, it’s been going very well for nearly 2 months. This continued weaning from ventilator support is a great sign. We’d love to say good bye to the incessant night-time beeping of that machine! Our next visit is June 6th, and at that time we’ll schedule a sleep study to learn what’s really happening with Jack’s Co2 levels and with his brain at night. This is likely to happen this summer. There will also be another swallow study this summer to help us learn how much progress Jack has made with his eStim therapies.
Jack also had follow up visits with Dr. Piatt and Dr. Walter, who have continued to monitor Jack for any signs of tumor reemergence. They indicated that we should have an MRI in November. If that comes back clear, Dr. Piatt said he feels that “we can declare victory over that tumor”. Another amazing piece of great news!
Jack wowed Dr. Walter with his spoken English skills–particularly when he stuck his finger in his ear and held it up to Dr. Walter, saying, “I got some potatoes in there!” (I’m sure oncologists could use a good laugh every now and again, but I was a bit mortified by that one…)
I was struck during my recent visits to the hospital at how comfortable –happy, even– I felt when I was there. I tried to puzzle through this very strange feeling, and a talk I attended by Dr. Kimberly Griffin, who studies the identities of transfer students through the lens of intersectionality helped me to make some sense of this. For any working mom, identities are always in conflict. When you explain to the crying child that you have to go to work, when you explain to the supervisor who was expecting something from you that you have to go fetch the sick child, there is an uncomfortable clash of very important identities. I’m a woman, a mother, a wife, a daughter, a professional, a scholar, an artist, a writer, an advocate, and an educator (and these are just the identities that spring readily to mind). As this intersectionality theory points out- we are all complex, and these identities wax and wane in primacy throughout the day, the week, the lifetime.
Lately, following some pretty wild shifts at my workplace, I have found my professional identity to be much like a hot, brittle planet orbiting a bit too close to the core of the system for its own good. Navigating the context in which that identity exists has recently forced me to aknowledge the gravity that I have (unwisely) given to this particular aspect of my self. Being at the hospital takes all of those questions and those unrelenting self-judgments, and silences them. That planet is knocked into a completely different orbit when I’m back in those hallways, looking at all that could have been, and all that we have accomplished. I can have just a single, comfortable “me” when I am there, and no one faults me for that– least of all myself.
I find myself mulling over this lately. Is there a way to meld my professional life with this other identity? Is there a way to take all of this theoretical and practical knowledge of information literacy specifically, and education and learning more broadly, and apply it to help other parents of a medically complex children? Is there a way that I can give back?
… I have some ideas. But that will have to wait until the next blog post!
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!
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!