Jack had another clean MRI of the brain this week, and a productive follow up visit with his neurosurgeon, Dr. Piatt. Monday will bring another follow up with Oncology, and we’ll decide how much monitoring Jack is going to need as we look to the future.
Since my last update, things have been going really well for Jack.
Jack has learned more than 25 signs, and is communicating with us nicely through gesture, some cooing vocalizations, and sign.
We had a great visit with pulmonology back in March, and we are now un-cuffing Jack’s trach several times a day for several hours to see how he tolerates it. if he tolerates it well for a few months, we may be able to fit him with a speaking (Passey-Muir) valve this summer! It will be so wonderful to hear his voice again. I have dreams in which I hear his laughter. I really long for that sound. Every day brings us a little closer, I think. All signs are pointing toward a successful move to a speaking valve; although he had many colds and aspiration close-calls this winter, Jack did not end up with chronic pneumonias– so his lungs have remained healthy despite the challenges that he faces. When you stop to think about that, it’s pretty amazing.
Although we hope for a successful move to a speaking valve, we cannot be certain that this will happen, and so we have been very involved in trying to get Jack enrolled at the Delaware School for the Deaf’s pre-school program with the hope of immersing him more fully in sign language. Although Jack has only a unilateral (one-sided) loss of hearing he does qualify for services, which is a great benefit to our family. We hope that Jack will be able to acquire language… not just the scattered signs that his mother has been able to pick up here and there. These services will also help us to learn what Jack needs from the family in order to help him to maximize the hearing that he does have. Once we finally get this going, the sign language scaffold will only strengthen Jack’s little brain– whether or not he is able to tolerate a speaking valve in the future. It’s not been too easy to get this going, however. Jack needs to be in the presence of someone who is trained in his care 100% of the time, which means that on preschool days his care will have to be split between a home-care nurse and his regular nurse-run day care center… a thing that is proving a bit harder to wrangle with Medicaid than it really should be. Once we get the final doctors’ notes, I think we will be alright. Fingers crossed!
And… man oh man this kid can walk! Here’s a video that gives you a sense of how much movement he’s now able to achieve on his own. He’s still unsteady, but he gains confidence every day, and we sure are proud of him.
Although there is so much good news, I should temper this with a bit of reality. Jack has been receiving e-stim therapies on his face and on his throat for about 6 months, but we have not really seen any improvement in his swallow or his ability to keep his saliva from aspirating into his trach. He remains extremely vulnerable to the threat of aspiration, particularly when he vomits. Over the last few months, he’s had some trouble with this. His nutritional requirements have increased, meaning that the volume of food that his stomach must handle is greater, and the rate at which his food pump delivers food to his stomach has also increased. We’ve seen some frightening night-vomiting, and some in the morning. We are still trying to find the right balance between safety, his need for mobility, and nutritional needs. But I think we will get there.
Now… Sam! Sam is doing great, and is adding simple sentences like “Shut the door”, or “Dinner is too hot” to his ever-expanding repertoire. He loves signing also, though he isn’t very consistent with how he uses it. He can’t say the “J’ or the “S” sound at the beginning of words, so we hear a lot about the adventures of ” ‘Gack’ and ‘Nam’. He’s become extremely willful! Now that language, mobility, and feeding himself are all in the bag, it’s become clear to him that his parents pretty much exist to thwart his further explorations of the world. So… we may have entered the Terrible Twos a bit early.
But, Sam is never intentionally rough or mean to his brother, whom he loves very much, and they play together pretty well. Here’s a video in which Jack and Sam each use their own modes of communication to tell me about their toy octopus.
Looking forward to more fun in the months ahead!