Moving on into Spring!

Hi there!

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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!  March-April 062Sam 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!

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Jack WALKS!

Everyone,

It was one year ago this week that our lives were irreversably changed.  I have no way of knowing what February will come to mean to Jack, in the narrative that he will one day stitch together for himself.  To me, it has deep traumatic resonances that have not subsided.  I   sometimes find myself confronted with very intrusive, vivid memories of the PICU when I least expect it.  Yet also, the experience and the full-sight-and-sound memories of it are an odd source of strength. What a tremendous perspective shift the whole experience has been.  You learn not to sweat the little stuff when you can smile and say that despite an uncertain future, I still have a family of four.

One year after he lay dazed in PICU, clinging to life, Jack grins toothily as he picks out his proud, wobbly steps into our arms.

What could possibly be better?  Jack is walking.

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Sorry It’s Been Awhile!

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!

image 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.

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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).

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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!

November: Communication and Motion

I am sitting at Jack’s bedside in a dark room strewn with toys as he naps. He’s had a rough few days of pesky fevers, persistent headaches that scared the crud out of me, and now things have settled into a familiar pattern of a bad virus. It’s not too bad- just some extra meds and breathing treatments throughout the day, and extra vigilance on our part. The missed work is the hardest part, and I hope we will get through this one without a hospitalization.

When Jack has headaches that are not caused by ear infections, I panic. I pace around a lot and chew on my fingers. We are very good at keeping the “what ifs” under stern lock and key in this house, but when I see Jack crying and clutching at his head, all the bad scenarios crowd around me, and I remember that the swamp is very near.

Oncology assures me that a reemergence of the tumor is not likely. The greater fear is shunt infection or failure. Thankfully, Jack’s bad headache seems to have coincided with what was probably a viral fever, nothing more. If we see it again, we’ll be heading to Dr. Piatt for a consultation, I think.

Perhaps one reason that my fears seem so amped up this time is that Jack has been doing so incredibly well.

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There are two very big pieces of news to report. First, Jack is beginning to communicate! He can sign “please” now, and “wash”. It is surprisingly difficult to teach a child who is not rewarded with food how to communicate. Turns out, the bath and playing with water are favorites, so perhaps that is why “wash” has had resonance with him. I’ve been staying up late here and there trying to learn signs. I’m now signing “thank you”, “mommy”, “daddy”, “bedtime”, “cup”, “cat” and “play” pretty consistently to him, in the hopes that if done enough he will pick it up. His receptive language has improved as well. If you ask him if he wants a bath, he will drop what he is doing and head for the tub. He is pointing to things with more consistency.

Jack watches everything, but he often seems withdrawn. We wonder, is that just who Jack is- more of an introvert? Is he cognitively different from us? What is he thinking?  It was as if John, Sam, and I were on an island, a solid place made of names, with rules and patterns that made things knowable. Jack seemed adrift on an ocean that we couldn’t bridge. His arm-waving was unintelligible to us; our constant chatter a barrier to him. When Jack first “got it” and began signing consistently for things that he needed help with or wanted, it felt like we had thrown a line into outer space and hooked the moon. A chasm had been crossed, and perhaps the moon was not as far as we had always believed it to be. Perhaps it had been sitting at the dinner table with us all along.

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Sam is Jack’s great ambassador to the world of language; the more Sam can pick up of some basic signs, perhaps Jack will pick those things up too, as it is clear that Jack wants to copy everything that his brother can do. Sam had been saying and simultaneously signing “please” for about three weeks before Jack joined in. He also signs “more” and (less consistenly) “baby” and “eat”. Sam’s own language acquisition has hit the explosion phase. He is saying new words every day now. The newest item yesterday was “bus”. It’s exciting to see Sam begin to construct partial sentences such as “Daddy go?” or “Bye to Daddy” and to follow simple commands. However, the command thing doesn’t always work out the way we plan…. the other day, he was carrying around a hunk of banana that he clearly was not going to eat. We asked him to go throw it away. He obediently toddled into the kitchen and returned empty handed. Only two days later did we discover the banana neatly placed in the pantry on top of some canned goods. Yuck!

The second exciting piece of news is that Jack is begining to walk! He’s not interested in the truck push-toy that Sam used during this phase. What he likes is the musical pusher that plays tunes when walked around the house. His gait is his own- he walks by lifting his whole leg from the hip in a very stiff-legged motion, stabilizing, and lifting the other. He hasn’t worked out the knees yet. The leg on the right is also turned outwards a bit, the foot pointing out rather than straight ahead. My feeling is, that’s great! PT and OT can work on the particulars with him- the motivation to walk is what matters most to us, and he’s got it.

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So excited to see where we go next!