August- Working on vocalizing!

It was a beautiful night here in Delaware and I was able to capture some great video of Jack in a chatty mood.  He’s come a long way and clearly understands vocal speech.  In this video, you can clearly hear him say hi, bye-bye and froggie.  It’s also pretty clear that he has a lot of learning ahead.  However, with his combination of sign and sounds, he’s improving his ability to communicate every day.

Summer 2015 Ups and Downs

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:

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The sunny courtyard, complete with bubbles, water play, and a vegetable garden that the kids can tend:

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Jack at song time, with his “twinkle twinkle little star” prop:

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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.

Ugh!

IMG_1895Though 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.

IMG_1903We 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:

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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!

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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!

Communication Breakthroughs!

I’m happy to have some good news to share.  Jack is working with a speaking valve at last.  I know everyone is eager to know just what it was like to hear his voice for the first time since he was a baby.

I invite you to share this moment with us!  This video was taken halfway through his first valve trial at daycare with his speech therapist:

Generally, it takes trached children a while to get used to a speaking valve.  It feels strange to them to have to force air up through the upper airway, past the vocal cords, to exhale.  Their mouths and noses have been relatively unused for months, sometimes years.  So, it was a great surprise to me when Jack acted as if nothing was different when we first put the valve on.  We’d expected to try to get a five minute trial in.  Instead, Jack kept it on – with perfect O2 levels – for 45 minutes!  His speech therapists and nurses were thrilled.

Jack’s voice sounded rusty at first, but here’s what he sounded like just 24 hours later:

Now, two weeks after we started, Jack is able to tolerate around 4 hours at a time on his valve, and is beginning to try to make some verbal-ish babble sounds.  He says “Daddy” by making the corresponding vowel noises;  “Ah-ee!”  He’s got a long, long way to go, but I think it’s clear that he understands the concept of speech, and understands that he may be able to obtain it himself.

There is another form of communication that Jack is beginning to really own, also, and that is ASL!  He recently started morning preschool at Delaware School for the Deaf (“DSD”), two mornings a week.  It took us about 2.5 months to get nursing, transportation, and (most importantly) the Medicaid funding necessary to make this happen.  But we are SO, SO glad that it worked out in the end.  Nurses N Kids is a great facility, and the therapies that Jack receives there are top-notch.  However, it’s not an educational facility, and there aren’t many peers who have similar abilities to Jack in his room at the day care.  We felt it was important to find Jack a rich learning environment with other children, and DSD has more than filled that role.  The classroom is beautiful, the spoken language teachers are amazing and the deaf teachers / ASL language models are so kind, and so patient (with me as well as my boy), that it’s no surprise that Jack came home with his communication book that the teachers put together, pointed out his language model and showed me how to sign his name!

I hope to write a full entry all about Jack’s experiences at DSD soon.

However, this entry wouldn’t be complete if I didn’t let everyone know that Sam, also, is making some major breakthroughs.  Yesterday, he was eating an English muffin pizza for dinner (a favorite), when Jack walked up to his high chair and peeked over the top, trying to get his attention.  Sam looked down and very clearly said “No, Jack- I’m eating pizza!” All of a sudden- out of nowhere- these sentences keep pouring out:  “Put the lid on it.” “I wanna hold it.” “Jack Jack is under the table.”  Also, he seems to have learned his alphabet and can count to eleven:

(For those who find Toddlerish a bit hard to understand, the video picks up with Sam reciting the alphabet at about letter G.  After I ask him to start again, he gets to about letter V and then looks out the window and says “Jack Ambulance!” since the ambulance was at that point pulling into the driveway to bring Jack home.  He then counts up to eleven with a little prompting from Mom.)

Saying that I’m proud of Sam would be pretty much the understatement of the year.  This little dude is curious, empathetic, and willful as all get-out.  He’s also excited about Jack’s voice, and he often comments on it.  Because we make a big deal out of Jack’s valve whenever it goes on, Sam complains that he wants one too.  We try to explain that Sam doesn’t need one because he already can use his voice, but Sam seems puzzled by all of this.  I think we finally made a little breakthrough today.  We told him that Jack needs the valve so that he can use his voice, but that Sam can always use his voice- which is in his neck.  I hummed while Sam held his hand on my throat to feel the vibration, and then he did the same on himself.  I have no idea what does and doesn’t compute for a two-year-old, but he seemed satisfied.

There is much more to share, but time is short. I’ll be sure to update soon with more information about Jack’s school and recent doctor visits.  As always, thanks for sharing the road with us.

Seizure / Living “in the woods”

First of all, Jack and Sam are fine.  We’ve had an eventful time since Jack’s shunt surgery, which I will detail in a moment, but first, I want to write about something that’s been on my mind for a few months.

A mother who is involved in an online community of parents whose children have tracheotomies recently wrote about what it means when your child is never going to be “out of the woods.”  I want to talk a bit about that metaphor here, because it has come to have a lot of power for me in the last few weeks.

Have you ever spent time alone in the woods?  (The actual, non-metaphorical woods, I mean.)  Everything in a natural landscape seems to be precisely tuned to the correct volume for the senses.  You can really take things in when you are outside.  Trees alert you to wind, light, recent rain.  Growing things make you note the passage of time in a way that you simply don’t while commuting, shopping, sitting at a desk.  You can watch the air condense and form mist in the evening.  You can actually watch it breathe over the earth.  Abstracts become concrete in this way.  Time, air, growth.

Have you ever spent time alone in the woods at night?  Now, nothing is concrete.  You hold the flashlight’s inconstant doughnut of light in front of you, filled with the inexplicable sense that something that has always been very close at hand has now swung its malignant attention upon you.  The person who serenely watched the movements of clouds over the lake hours before and made existential comments is now scarcely a person at all.  Just a small, small thing picking an unsteady path through the trees, acutely aware of how fragile her existence is.  She is part of the woods, not sitting above it somewhere, as vulnerable as the twig that cracks underfoot as she steps off of the path’s hard clay.

Being a medically fragile family is just like this.  When there are no fevers, no aspirations, no neurological symptoms, you experience a clarity and serenity that’s hard to express.  Your goals, once abstract, are concrete and stay in sharp focus.  You are not distracted by things that don’t matter.  The slings and arrows of the day fall away easily.  Your children’s accomplishments seem amplified when it was never a given that they’d accomplish them.  You feel almost heroic with this energy and are humbled by the thousand acts of grace within your community that you are uniquely privileged to witness firsthand.

And then… night sets in with the phone call in the midst of a busy work day.  Some new symptom, scan, or emergency arises, and the lights are out.  Now, you feel the enormity of the uncertainty of your situation, and your powerlessness in the face of it.  All the perspective you thought you had in the light is utterly gone in these times.  What can you do?  You wait the terror out and hope for the daylight to come back.

We’re back visiting the nighttime woods with Jack.

Monday, we got a call from Jack’s daycare indicating that Jack had a “neurological episode”.  He was just about to have speech therapy, when he put his chin down on his shoulder, became non-responsive, and his eyes diverted to the right, twitching repeatedly, just as they did during the first days after tumor resection.  It lasted two minutes, and it took a full 15 minutes afterwards to bring him back to himself.  I’d say seizure is one of the “big three” that we fear the most in Jack’s case… tumor reemergence being #1, severe aspiration and/or loss of oxygen being #2, and seizures being #3.  What makes this episode so frightening is that its something we’ve never seen before.  What does this new development mean?  After a day in the ER, a rapid MRI scan, an EEG and a follow up visit with Dr. Piatt, we are no closer to understanding than we were before.

I was grateful that Dr. Walter called to assure us that this doesn’t mean that the tumor is reemerging, and most likely the recent shunt surgery is to blame.  There are no guarantees that Jack won’t develop a seizure disorder- after all, his brain has had many assaults.  Indeed, Dr. Piatt concurred that Jack has enough risk factors for seizure that long-term medication sounds like a wise course.  This new medication is worrisome to us, as we don’t fully understand its side effects or implications.  Our appointment with yet another team of doctors in the Neurology unit at the end of the month should provide more information.

So Jack now has a new medication, and we have a new threat to monitor, but life goes on as before.  Monday night, after a day which included a seizure, being restrained for an MRI and being forcibly hooked up to electrodes for a lengthy EEG, he ran around in his diaper laughing his silent laugh and chasing his brother.

imageNo, he may never be out of the woods, but it is clear that he is enjoying the hike nonetheless.

Emergency Surgery

Hi, all:

Jack is recovering from an emergency surgery that took place on Monday night to repair his shunt.  He’s home now, and doing well, though with some more battle scars.  Those of you who have been readers since February 2014 may remember that the shunt was placed to allow the cerebral spinal fluid to drain properly out of the ventricals of the brain, since the tumor destroyed some of the natural pathways that exist, and the third ventriculostomy performed by Dr. Piatt did not seem to resolve the issue.  Unfortunately, shunts are a poor technology, and they fail at a rate of about 20%… meaning that if you have a shunt that works perfectly for its entire lifetime of 10 years, you can expect at least two surgical revisions during that time– though many patients have many, many more revisions than that.

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Here’s how it all went down:  On Monday morning, Jack woke up happy and playing, but John made a comment that his balance seemed a little ‘off’ somehow– which is hard to discern in a toddler who, well, toddles. A few hours later we received a call from Nurses n Kids stating that Jack was vomiting and not himself.  I raced home to pick up John and Sam (who was home sick with a fever that day) and then to pick up Jack.  Jack’s nurse also commented that he seemed “shaky”.  Once home, we played with blocks and watched Signing Time together.  But no matter how slowly I set the pump for his food, Jack couldn’t keep anything down.

I called Jack’s pediatrician, who recommended that I call neurosurgery based on my concerns about both the vomiting and loss of balance.  Neurosurgery recommended a wait and see approach, given that we have been dealing with some vomiting issues related to Jack’s changing food volumes.  But, by about 2p.m., things really went downhill fast.  Jack started staring off into space, acting really out of it, and we saw lots of increased vomiting and lethargy.

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With the help of Jack’s uncle Tucker, I took Jack to the new ER at Nemours.  We were seen by a doctor who initially made Jack’s diagnosis.  She agreed that what she was seeing looked like hydrocephalus.  We waited around until about 10:30 for an MRI, during which time Jack grew more spacey and sleepy.  It was very frightening.  Once the MRI was complete, things moved fast.  Dr. Piatt had been at home watching for the scan, so by the time we made it back from MRI to the ER, he had already called in and was on his way.  The surgery took a few hours, from midnight to after 2a.m.  Thankfully, a full shunt replacement was not necessary- though an additional incision had to be made to move the catheter that enters the brain to a more helpful location.

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Less than 48 hours after the surgery, Jack was completely back to his usual self.  It was a stunning turnaround.  Though the two-day hospital stay was nice in its own way– we got to see many of the people with whom we became very close last year and got to experience the new and improved hosptial accommodations– Jack was very eager to get out and was making a sign that was a cross between “sunshine” and “outside” over and over again as we wheeled him out of his room and to the car.

I’m sorry to report that this hasn’t been easy on Sam.  He enjoyed his unexpected time with Gramma and Nana, and happily resumed his play with Jack for the first several hours that Jack was home, but then suddenly stopped short, looked aghast at his brother, and said very clearly, “Jack a boo-boo on head,” and pointed repeatedly.  He cried and needed lots of hugs and reassurances, inspected the rest of our heads for boo boos, and he’s been acting out quite a bit ever since.  He repeats this phrase several times daily, trying to understand.  What a vast difference from a year ago, when neither child understood any of this.  Now, things are starting to become clearer to them, making the way forward less so for us.

But we’ll continue to do our best.

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!

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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