2017: Bounce Back Day!

The brain.  What an amazing, intimate and yet alien mass it is.  Sometimes I find myself thinking about the structures of the brain, the vertical and horizontal weave of networked cells: a microscopic, synaptic forest that makes us who we are.  I think about Jack’s brain, the intense little machine that it has become, and its limitations.  I think about my own memories, represented somewhere within hidden networks of dendrites and axons, some memory pathways so overgrown that they cannot be recovered until they spring to life uninvited through some unrecognized association.  You stumble onto one strand, and find an entire forgotten tapestry.  For me, in February, associations crowd thickly around like little tripwires.  The half-thawed ground, the crackling overhead rivers of starlings on their morning and evening commutes have taken on a dark meaning.  The bare trees seem paused, waiting for the blow.  When the holidays end, when the semester begins, there is a part of me that starts looking over my shoulder.  Sometimes I realize right away that it is getting close to anniversary time.  Sometimes it takes time for me to understand why I feel so strangely off-balance.

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Rituals are powerful, and we have a ritual in our house that is like a spell that wards off some of those swampy, post-traumatic ruminations.  It is time for Bounce Back Day.  Each year on February 27 we talk as a family about Jack’s surgery, with a little more detail each time.  We look at pictures and we talk about the experience.  Then we go do something fun and focus on how glad we are to be together.  This year, I thought Jack could pick what we might do.  He thought about it, and made some suggestions:

  • We can do some Star Wars and Paw Patrol puzzles.
  • We can take all the dirty sheets off the beds and put them in the laundry.
  • We can all go to the forest and throw rocks in the river.

img_1125Ah, the mind of a three year old- both ridiculous and profound.  Just look at that list: he wanted to spend time as a family tackling challenges, keeping the household tidy and running, and playing in the woods.  I think this three year old child just captured my life’s philosophy.

It’s been a while since readers of this blog had some video content, so I’ve curated a few family videos here.  Hope you like them!

As you can see, in the last six months, Jack has become ever more communicative and loves to spin wild stories.  He rarely uses sign language now, preferring instead to use his voice.  He loves to read, often stopping us to ask if we can explain what this or that word means.  He enjoys making up words as well.  For a long time everyone was a silly “baroush”, “hatihot”, or “baroonjay”.  He cracks himself up with these verbal creations.  He can spend a truly impressive amount of time on a puzzle- from 30-piece puzzles with large pieces to mini puzzles of 6 pieces each smaller than a dime.  He remains outgoing and open, and will say hello to anyone.   (The last time we were at AI for a brief check up, he stopped a custodian in the hallway to offer him a high five.  I must say, by the surprised look of delight on the gentleman’s face, I think Jack made his day.)

img_3351Sam remains our happy, sensitive soul.  Right now his great loves are art and playing any game that involves running around with a foam sword.  As you can see in the video, he led me on an adventure under the kitchen table a few weeks ago with his foam sword to fight an annundoolie-flavored dragon (I didn’t know that dragons had flavors!)  I think one of my favorite things about Sam is his dancing.  It’s getting zanier by the day.  He insists on footie pajamas every night and dancing time is apparently right before bed, so the pajamas undoubtedly add to the zany effect of his wild dance moves.

These two bring so much sunlight into our world.  It dances through the tangled bracken of our complicated life, illuminating all the unexpected beauty beneath.  Three years after we sat in surgery wondering what would be left of our son and of our family at the end of it, we are all walking through the forest and throwing rocks in the river together.  It’s awesome.

Medically, we have had an easy year free of hospitalizations.  Our first!  Jack’s had illnesses on and off but no seizures, no reemerging hydrocephalus or such sudden pitfalls.  We have even had some positive developments.  First, Jack had a sleep study this fall that he passed with flying colors.  The study showed that his brain is functioning normally in sleep and there is no central apnea as a result of his brain injury that would require a ventilator for life.  Second, we had our definitive, final MRI showing that his brain continues to grow normally, and his tumor is very much gone.  We are now well past the period for re-growth, so we can say that it’s not going to come back.  We will only be followed with MRIs every 2 years rather than every 6 months to check on the status of his hydrocephalus.  Such a blessing… those words don’t even come close to expressing how incredible it feels to be releived of that burden.  Third, we are weaning him off of his ventilator, (first by removing the forced breaths, and then removing the positive pressure that the vent provided, and now he is on another machine (the Airvo) at night.  This is a very simple machine which gently blows heated, moist air to an area just in front of his trach.   (You can see it in the picture below.) When he is healthy, the work of breathing is all his, and he does well.  When he’s got a cold (which is still somewhat frequent) or a fever (also still quite frequent), his 02 levels drop and he does require the vent.  Amusingly, he doesn’t like to have the Airvo on as he falls asleep- preferring the ventilator.  Some kids like teddy bears, some kids like hard plastic tubing, I guess…?

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We’ve faced continual trouble finding nursing coverage, so lately we’ve had to cover 1-2 night shifts per week ourselves.  As I was writing this post, I learned of another nurse leaving the agency, which will mean that we no longer have Sunday, Monday, Wednesday, and some Friday coverage. Even on nights when Jack is healthy, covering the night shift ourselves is a trial.  We either must sleep on his floor in short spurts while waking to check the Airvo, his food pump or his oxygen monitor, or stay awake.  Each month that Jack does a little better off of the ventilator gives us hope that someday we can let go of constant nursing coverage, but we still desperately need it right now.  Jack is fortunate to have a great team of nurses at his side.  The little man has developed quite a temper, and our nurses do a great job of not taking too much of his nonsense, while giving him real affection and great care.

This May, we expect to have a great visit with pulmonology.  We hope to get him off the vent and discuss what further diagnostics might be needed to reassess his swallow in light of the fact that he has had so few pneumonias this past year (and is now participating in all meals- tasting everything but also clearly ingesting some of what he tastes.)  I think the future for this little boy is very bright indeed.

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Thanks as always for keeping Jack and Sam in your thoughts!

September: Back to School Thoughts

It was a hot day, so we started our outside play early. With the aid of a cracked plastic bucket of chalk, our driveway transformed into a dusty pastel town- the town of Cucumber Sauce.  Baby blue for the police station, dull khaki green for the bank.  A grocery store, a library, and a park with a bright red swing set and multicolored grass.  We had a balloon parade all the way from the firehouse to the outskirts of town, our hands clutching our imaginary strings while the bright invisible orbs bobbed above us in our favorite colors. The boys ran or rode their tricycles to the different places in town.  They were serious in their errands.  Head to the bank to withdraw funds. Go to the grocery store to buy supplies for our park picnic.  When the errands were done, we sat cross-legged and savored the cloud-soft icing and delicate crumb of imagination, while our sandals and pant legs smeared the dusty hues of our chalk park into a strange summer haze.  A few minutes later we were sitting in the yellow Cucumber Sauce Public Library, while Sam, his hands cupped in the universal book position, told the tale of “The Person Who Was Afraid of Fish”.  Jack sat on my lap and relentlessly interrupted his brother with his own ideas about the story.  I rested my head on Jack’s, sleepily listening to Sam struggle through his half-baked narrative, his voice almost drowned out by the riotous snap-crackle-pop of late summer bugs, and I breathed in the smell of Jack’s sun-warmed hair, pleased to have just one more week before the start of the semester.

 

Maybe it was the imaginary play that had primed the recollection. Maybe it was the reedy, insectile language that surrounded us- the whirring cicadas, the jackhammer of locusts.  Perhaps it was the sweaty scent of his hair, that not-quite-permissible musk of the outdoor child which tugged the memory intrusively into my consciousness.

 

I was nine.  It was my first year at summer camp.  There was homesickness, but mostly I was in love with this newfound land of songs, cedar trunks, jangling mess halls, crackling taps on the loudspeaker at night and damp morning flagpole assemblies.  I loved archery, swimming, crafts, but especially a session dubbed “farm”.  I suppose farm must have been supervised by someone, but what I remember is long periods of just watching things happen- holding, touching and listening.  There was a cow and a calf, a chicken coop, goats and a few sheep.  There were barn swallows and mice in the rafters, blue flies and dust motes in the hot air, and the sweet-sour olfactory cocktail of a barn in summer.

 

There were perhaps a dozen chicks- though calling them chicks is being generous.  They weren’t the yellow fluff balls of Easter fame, seemingly created to rest in a child’s hands.  These were bigger, ganglier and somewhat mangy looking- their adult feathers not quite in.  They were the middle schoolers of the chicken world.  We would eagerly scoop them with two hands, their legs hanging down beneath our fingers in an odd knock-kneed pose, their long, almost naked necks arcing like ships’ prows.

 

I don’t remember seeing it happen or hearing the crack of the wooden door as it came down like judgement on the neck of the bird.  I do remember crowding around the cage with my peers, watching it struggle and claw the dirt.  “What happened?”  “Is it’s neck broken?”  “What’s wrong with it?” “It looks funny.” “Can we help him?” “Yes! Make him a little bed!”

 

The next day, the counselor gave us the broad strokes- our little patient didn’t make it.  But a friend who’d been at the farm just after our class soon told us the manner of it- the wounded bird had been pecked to death.  As I lay in my hot, narrow cot that night listening to the summer bugs, I thought of it.  The struggling bird lying there, panting, one flat, black eye fixed upwards like a beached fish, powerless as the flock  gathered as one and descended.

 

The fear.  I sit in summer sunshine with my sons in the midst of one of the best mornings of my adult life, and there it is before me like a shimmering mirage obscuring the horizon.  This is one of the swampy places, where the terror finds you even in your joy- perhaps because of it.  For me, although we have come so far, this is one of the great fears against which we have yet to be tested: the flock.
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I want my sons to venture out into the world.  I want them to stand at the rocky edge of what they know and welcome what is to come.  I want the acceptance of this unknown world to swell beneath them, the benevolent laughter of their peers cresting to patter gently about them- a welcoming.  I want Sam’s ridiculous dance moves and insane vocabulary to be a cause for celebration, not ridicule.  I want his steadfast love of the color purple to endure until he leaves it behind, untarnished.  I want the visible marks of Jack’s victories to be as unremarkable as the color of his hair- and not a signal that he is unfit to take his place among the flock, that he should be sacrificed.  After all that has been done for our family, all the kind, skilled, adult hands that have borne Jack and Sam up, will it be their peers who take them down?

 

I drove through campus during move-in weekend last week.  The faces of the parents I saw reminded me that this is not a fear that is unique to those who parent a child who is disabled, different, or medically complex, nor is it one that only afflicts the parents of young children.  First day of preschool, first day of college… is there really anything we fear more than the brute power of the flock?

 

Jack will be heading back to DSD today, his first day of preschool.  There are only a few children in his class, all with differing levels of hearing.  This year at least, we have found him a supportive educational community, and we can put aside the fear for a little while longer.  And yet, even after working so hard to make DSD a reality for Jack this year, I struggle with the decision.  Jack and Sam spent a fantastic August together at Sam’s daycare center.  Though shadowed by a nurse, Jack has been able to enjoy all of the ups and downsides of spending his days with peers.  It’s the first time he has been in a non-special education / non-medical facility.  He seems to have been able to fully participate despite the noisy rooms, despite his communication challenges.

 

Are we choosing a small environment devoid of “typical” children for Jack because we are afraid?  Or are we choosing it for all of the right reasons- for the qualifications of the teachers, the amazing facilities, the opportunity for a bilingual education?  And what about Sam, who went off to school today feeling alone and missing his brother. Am I making the right choice for him?

 

The rain came a day after our games, washing away our little town.  Cucumber Sauce- population of three humans plus an infinite number of figments- was gone before we heard the water in the gutters.  The little chalk town where the bakery is run by a pink seahorse who bakes sausage cake for turtles (but not for horses, because horses don’t eat sausage), isn’t a place where anyone can live forever.  We’d be fools, and very bad parents indeed, if we tried.

 

July: Going With Your Gut

It was our first ever family vacation last week!  We packed the minivan full of gear (the vent, the AirVo, the food pump, boxes of formula, boxes of suction catheters, boxes of inhalation-grade water, oxygen, emergency supplies) and the usual family vacation items (little boy backpacks full of toys and coloring books, suitcases, water shoes and toothbrushes and sunscreen), and bounced up to Connecticut to see one family, then to NH to see the other.

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It was a needed break.  July has been a hard month.  We had to put our wonderful cat down after 13 years of friendship.  This was the boys’ first experience of death, and they are still processing it.  Jack especially has been asking where Buca is each morning around the time that we would have been giving him his medicine.  We also had to say another kind of goodbye.  Since Jack’s discharge, he’s been looked after during the day when not in school by a daycare facility which provides nursing care and therapy services.  These are the nurses who have risen early to get on an ambulance to ride to our house and deliver Jack back to the facility in time to catch the bus to DSD.  This is the team that spotted Jack’s emerging hydrocephalus symptoms when he needed a shunt revision.  This is the team who saw the onset of Jack’s seizure, kept him safe through it, and kept careful notes of its characteristics.  And this is the therapy team who worked tirelessly for Jack, pushing him and pushing us to work harder at getting him mobile, accessing language, learning to socialize.  This team has become like family.

Yet, in the last 5 months, most of the nursing staff there turned over quite suddenly.  We learned of at least one occasion in which a nurse who had formerly worked there full time stopped in to see him and found him asleep without his vent, an oxygen monitor or a nurse- a dangerous situation.  There were occasional mistakes- nothing serious, but then Jack’s behavior surrounding basic care began to change.  He expressed fear and distress whenever we needed to clean his trach or g-tube site.  It’s been an uphill battle to get Jack back to a level of comfort with basic care since then.

We decided to remove Jack from the facility this month.  It was a terribly difficult decision. It means that Jack is missing a month of therapy with an extraordinary team.  It means an abrupt goodbye to teachers and nurses who have always advocated for him, who truly love Jack as if he were their own.  And it means saying goodbye to Urgent Ambulance, an amazing team of people who have been bringing Jack to and from daycare for us each day.  These folks took time out of their own day to buy Jack a balloon on his birthday.  They play music, flash the lights for him… they do a lot to make him feel special.  Part of me will miss the daily rituals surrounding the comings and goings of the ambulance.  Knowing I have to hurry home to intercept the ambulance has kept me from working late most nights, and I’ll miss hearing Sam shout “The AAAM-Bu-LAAANCE!!” when that white shape pulls into the driveway.

I’ve listed quantifiable, objective reasons for our course of action here, which may lead you to think that this decision was entirely rational, measured, and clean.  What is harder to detail is the way that our feelings play into making such a decision.  According to the ubiquitous Meyers-Briggs Type Indicator, I score fairly high on the intuition scale.  When I was in high school, this classification seemed to affirm that I had some mysterious, little understood type of access to the world that others did not have- that my gut feelings were more likely to be right than others’.  (Maybe I was even a little psychic?)  Maybe the world contained mysterious forces, and I was one of the few who could interpret them (always correctly, of course).  Thankfully, 20 years of making mistakes has more than tempered this view.  Now I see this aspect of my mind quite like that teenaged daughter.  Full of promise and able to cut through a lot of nonsense with the occasional flash of insight… but also generally lacking impulse control and not to be trusted with the car keys.

I’ve been thinking a lot about when to “Go with your gut” when making a decision about education or care.  How should the ethereal feelings and inscrutable conclusions that form rapidly in the intuitive mind be allowed to influence decisions when you’re caring for someone who is medically complex?  When do you stop weighing the logical pros and cons and run with your intuition?

Sometimes, the information received from the intuitive mind is as obvious and incontrovertible as steam rising from a morning cup of tea- a knowing that is as fundamental and taken for granted as the laws of physics- just an overlooked piece of the picture.  Yet more often, I find that unpacking my own intuitive judgments is more like watching a wisp of cloud in a clear blue sky.  You can be aware of its presence, see the movement of the vapor, make a study of its tendrils curling in on themselves, you may even be able to define its edges. But determining its true size, its relevance, is impossible because your mind cannot perceive the depth of the sky.

How do you recognize the errors in intuitive judgments and refocus when incorrect?  I knew that the new staff at the daycare was making mistakes, and these mistakes were filed away in a log book of sorts in my mind, adding up over time to an unsavory picture.  Yet, my mind is not similarly keeping track of all the times that things went right, so a true accounting is not really possible.  Like the depth of the sky, we lack an understanding of our own minds, and this leads so often to poor “gut” conclusions.

In the end, however, Jack’s behavioral changes are ultimately what forced the decision, despite my uncertainty about whether “trusting my gut” was really the right course.  Jack just didn’t seem to get out of it what he once had.  This is the hidden strength of intuition.  It works poorly when trying to make a decision on something you know only a little about, like (for me) what nursing training standards should look like in a pediatric patient extended care (PPEC) center.  Yet, it works very well indeed in spheres in which you are an expert.  So, while you’ll never hear me utter the phrase “mother knows best” (because I don’t), I do spend an enormous amount of time with Jack and Sam.  I watch their faces as they react to the large and small aspects of their life, I observe their bodies in anger, at rest, at play.  At least right now I can say that I know my son pretty well, and I trust my gut when it tells me that he’s not okay.

My own rule of thumb for making a gut decision vs a solely logical one adheres pretty closely to this- do I know a lot about the subject I’m making a gut call on?  No?  Then I better do research and talk to some experts and mentors.  Do I know a great deal?  In that case, I should listen closely to my intuition.

IMG_20160801_090507958In August, a lot will have changed.  We’ll miss our furry companion, we’ll miss our old friends at daycare, and our friends on the ambulance.  But we’re looking forward to the exciting things that are ahead.  Jack will soon be picked up and dropped off by a school bus for his all-day program at Delaware School for the Deaf, which will solve our major transportation problems and meet our desire for Jack to have a rich social learning environment.  Medicaid picked up the cost of additional home care nursing hours, and Sam’s daycare, Learning Lane, didn’t hesitate when we asked if they could provide care for Jack during the day for the month of August, if a nurse is with him.  The boys’ first day at daycare together was today, and they did well.

PS:  If you are interested in reading about the strengths and limitations of the intuitive mind, I highly recommend reading Daniel Kahneman’s Thinking Fast and Slow.

 

 

 

June: The Professional is Personal (and the Theoretical is Practical!)

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Faculty program planning

On June 1: I led a team of librarians in providing a workshop for faculty at our Summer Faculty Institute on campus.  I had the opportunity to invite the scholar, writer, technologist and all-around great person Dr. Tom Mackey to provide the keynote for the information literacy track that the library sponsored. Because our campus is undergoing a general education revision, a discussion of metaliteracy and its impact on information literacy was timely.  This is the first time that I have seen our library put forward such a cohesive effort to push library instruction out there, and I was proud to have been part of it.  Some great conversations emerged that I hope will help the UD Library move forward.

On June 2: I took Jack to Christiana Hospital for a swallow study (the first since 2014), to learn if he had regained any function now that he has had electronic stimulation therapy during feeding trials for a few years.  He was frightened by the large machinery (what three year old wouldn’t be) but we both tried to be brave.  He, as the machines whirred and clicked, and I too while listening to the radiologist’s subtle narration: “Come on, Jack- Oh, no… No, Jack, oh n-n-no…!”  Jack’s feeding therapist, Debbie, who has worked tirelessly with him on feeding, was visibly crushed by the lack of progress shown.  I was not.  While she may have seen advances in chewing, coughing to clear, etc., we still see plenty of aspiration at home, so this was no surprise.  We’ve seen so many miracles.  Alas, this one still eludes us for now.

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Cramming for the IEP meeting

On June 3: John and I joined a team of 15 educators, nurses, therapists, and administrators for Jack’s first IEP meeting.  An IEP (Individualized Education Plan) is a very important document for special needs children who will require extra educational supports; the meeting represented an important transition for Jack.  Because he is now three, he will no longer receive school and therapy services through Child Development Watch, (“CDW“) which is Delaware’s early intervention program.  This IEP meeting would determine which therapy services would be provided to Jack and how frequently, and what school placement will provide the “least restrictive environment” for him.  In the many meetings which led up to the IEP meeting, I was amazed to find myself feeling overwhelmed and inadequate despite my M.Ed and professional background.  I found the back and forth between school district representatives, caseworkers, teachers and therapists dizzying.  I encountered what it must feel like to be in a bad information literacy class, with a librarian who speaks in his own acronyms, his own language- but doesn’t take the time to gauge the learner’s needs and adjust his pace.  Thus, it took a lot of work in the six months prior to the June 3rd meeting -a lot of reading, a lot of discussion with family educators and deaf education advocates- for me to gain a functional understanding of the issues and to build a sense of what questions I needed to ask, what to leave unsaid.  Thanks to these partners and a great deal of careful groundwork, the meeting (which had shown every sign of being somewhat contentious) went smoothly, and we got Jack the placement at Delaware School for the Deaf that we had so hoped for in the coming year. We’re happy to report that he will attend school all day, 5 days a week, in a sign-supported speech learning environment starting this September.

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In my last post, I wrote of trying to find ways for the “mother-and-advocate” self to be at peace with “educator-and-career-lady” self, and I think I’ve begun to hit on it.  The Association of College and Research Libraries provides a Framework for Information Literacy which guides librarians’ thinking and ? teaching around information skills.  One of the frames, entitled “Research as Inquiry” outlines several knowledge practices: actions regularly taken by those who are becoming more agile at working with information.  I think this frame is especially helpful for parents of medically complex children, so I decided to map these practices, along with lessons learned and strategies that I have picked up in my own journey as a mother (who also happens to be a librarian) of a medically complex child.  The piece is strictly practical in nature and will appear in the August edition of Complexchild.org.  While I recognize that putting this work forth in an online magazine might not make it as valuable to those reading my CV as a peer reviewed journal article might, I think that the opportunity to help others as they struggle through the real challenges of negotiating information ecosystems on behalf of their own children is worth it.

I also was recently able to take over the liaison role to our campus’ Disability Studies minor.  I volunteered our family to pair up with a team of students in the program doing a capstone project.  They met with us to learn about Jack, talk about the services and policies that impact his life, and created a video to show Jack’s story. Their final project featuring our family is here.   While the video probably gives us more credit than we deserve, this interaction with the students closed the loop for me.  By sharing my experience as a mother of a medically complex child, discussing strategies, hopes and concerns with the students, we helped make the theoretical practical for them.  By seeing the product of their work and observing their information gathering and creation process, my work as a librarian was greatly enriched.  I thought about what it truly means to be a student tasked with creating new knowledge products which have a life outside of the classroom in a networked world.  I drew greatly from this experience as I thought about how best to structure our summer faculty institute workshop for faculty.  In essence: the students connected the practical to the theoretical for me.

imageIt’s an exciting new avenue of exploration for me, and I hope to be able to develop it further by taking on new professional challenges, and by increasing my engagement with local disability advocacy groups.

Next post:  A deeper dive into the educational and care arrangements for fall, and thoughts about the role of intuition when making care decisions.

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!

MRI Amazingness and an Update-in-General

Well, Jack was pretty worn out after his MRI last week!

IMG_0741He awoke from the anesthesia very groggy and fussy, but did great after just an hour or so and played happily all afternoon.  My mom was a tremendous help in getting Jack and me to and from the hospital for the MRI this week, and getting John and Jack to a pediatrician’s appointment, all while helping to transition Sam to his new day care environment. Did I mention she’s missing her anniversary for all of this??  She’s amazing!

An added complication this week… we’ve decided to drop our second nursing agency.  In addition to longstanding concerns that we have had about how this company trains its nurses, we’ve had some recent problems with night nurses  who have slept through alarms.  I’ve even had a hard time waking some of them.  In the community of trach/vent families, this problem is common place.  Let’s face it, there isn’t a more sleep-inducing place on the planet than a baby’s room- especially when that baby has a ventilator, which is an extremely effective white-noise maker.  Many of our nurses are parents of young kids, working more than one job, and sometimes pulling shifts that would make normal human beings buckle.  But sleeping through alarms… particularly oxygen alarms, really frightens us….

… especially since Jack pulled out his trach for the first time while in the car in a Walgreens parking lot last Sunday, signalling that the risk of trach-pulls is growing.  I was in the store, and John was minding Jack and Sam when it happened.  John singlehandedly got Jack out of the carseat, uncuffed the trach and safely got it back in.  I bet that the Walgreens staff won’t ever forget the sight of John racing through the doors with a red-faced baby in his arms yelling “Meg! He pulled his trach out!”  while holding a medical apparatus in place with his fingers.  I had the easy job of hooking up some oxygen and reattaching the trach ties.  John was truly the hero.

If you search Google for images of “Fatherhood” what you typically see is a dad with a healthy, bright-eyed youngster, helping with homework, playing baseball, giving piggyback rides, fishing, or holding a flawless newborn.  You don’t see a lot of special needs dads represented pretty much anywhere.  You don’t see the crumpled shape of a man lying on his child’s floor next to a bunch of intimidating medical equipment, which he knows like the back of his hand, and can troubleshoot with the best of ’em.  You don’t see the dark circles of exhaustion, the hours spent pouring over medical equipment inventories to make sure that the order is correct.  You don’t see the guys who are making those hard phone calls to nursing agencies or yanking a choking baby out of a carseat to get his trach back in.  This is an absolute tragedy.  There’s no better symbol of strength, dependability, resourcefulness, responsibility, love, and tenderness on this earth than a special needs dad who rises to the occasion.

And he still manages to get the chores done, too! (with his helper(?) Sam, of course!)

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And now… for the big news.

Jack’s MRI was clear.  There was no new evidence of the tumor.  We visited the oncologist today and I had the opportunity to compare the MRI scans taken back in February, and those taken last week.  The big news is that in the right posterior portion of Jack’s brain, where that horrible, nectarine-sized tumor had crowded out and smashed the structures of Jack’s brain, one could see nothing but healthy anatomy.  Dr. Walter pointed out the spinal cord, the pons, the brain stem, the cerebellum…. all (almost) fully regrown, rebuilt from the rubble.  In April, the MRI image that I had seen was that of a huge, black hole where the tumor had been scraped away.  No gray matter was left there; just a crater.  Looking at today’s image was like looking at a strange and beautiful garden of leafy, organic shapes, packed together densely and thriving.

Jack seems to want to show us what this all means.  This weekend, Jack climbed up the stairs in our house, right leg leading, left leg following, one by one.  He made it all the way to the top and popped his lips triumphantly.  He also started placing his hand images that we asked him to show us within the pages of books, doing so with enough consistency to convince us he was understanding what we were asking him- even if he didn’t always get it right.  Finally, and most exciting, he has begun to creep sideways while holding on to furniture.  Nurses N Kids will soon be fitting Jack with a walker to get him used to the feeling of movement without much risk of a bad fall (his balance still needs some improvement.)

Yep.  Our JackJack is pretty incredible.

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Sam, 15 months (and a swallow study for Jack)

It’s Sam’s turn to get the limelight today.

Sam is growing up. The long days and nights slide towards childhood. Every too-early cup of warm milk that his father delivers when he wakes, and every late night like that I spend on my feet preparing his meals have been fueling this transformation; and now all at once it is upon us. If I take my eyes off of him for even a minute I’ll miss it- any second now, as unnoticed as a stray hair falling away, his infancy will be over.

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He walks everywhere- no more crawling at all. He babbles incessantly in Samglish, but can say “Mama”, “Daddy”, “Kitty”, “nummy-nummy”, “Nana” (we think?), “up”, “uh oh” and “that”. He’s learned to make the sign for “more” and “all done”. His relationship with books is really extraordinary.  He’s obsessed with them, and even spends long moments completely engrossed- though now it is much more desirable to look at the books with an adult reader who can quiz him on where this or that object is, or talk about what’s happening on the page.  He especially enjoys showing his readers pictures of tractors or trucks.  (These, apparently, are of utmost importance.)

Sam, a few inches taller than Jack, and a few pounds lighter, is a little, golden-haired beanpole.  It makes him look significantly older than he really is.  And it’s true that Sam has often had to BE older than he really is.

Just now I passed by his room, twenty minutes after he was put to bed.  Sam has to go to bed first, because it takes two of us to bathe Jack.  From behind the closed door, I heard something extraordinary. A wordless, almost-conversational “ohm” that rose and fell musically.  He was singing to himself.

Standing there, dirty bottles and laundry in hand, listening, I felt two things.  First, the guilt.  I’m so, so sorry that Sam has had to learn -again and again- to comfort himself.  I want to have the freedom to rock him to sleep every night, but since he is a twin, Sam never got too much of that, even before things got complicated. Since Jack fell ill, Sam has been expected to manage shifting caregivers, strangers in his home (though our nursing staff has always been loving toward him), and- hardest of all- being handed to whomever is close by whenever his brother’s alarms start sounding.  It’s not the equal-footing life I wanted for my boys, and already they are being shaped by it.

The guilt was tempered by a second wave of feeling, so mixed in with the first that it was hard to pull apart.  I feel intense pride and admiration for this little blond trooper who spontaneously wraps his arms around his brother, his cheek resting on the top of Jack’s head.   He’s my partner, this little resilient boy who (I am told) looks like me.  He’s a joyous warrior, and I can always count on him to do his part for this family.

Though I will miss the once-chubby face and silly, toothless smile of days past, I love meeting this emerging child who lives in our house, who loves books, and who knows how to sing himself to sleep.

 

sept2014In other news, we had a swallow study at Christiana Hospital today.  Jack got to have a spoonful of his old favorite- pears and raspberries, though now laced with barium to provide an x-ray contrast.  We watched the x-ray on the screen as a small portion of it was swallowed.  The remainder pooled in his airway, likely sitting on top of the trach’s cuff.

Debbie, the speech therapist who will soon be working with Jack to provide eStim in hopes of strengthening and enervating the muscles involved in the swallow, was neither positive nor negative about it.  She simply stated that the study allowed her to see what she needed to know to proceed.

So, we can think of this as a confirmation of what was known: Jack doesn’t have a functional swallow, and cannot protect his airway.  But, we’re closer to getting him a therapy that may provide some help.  I had a great impression of Debbie- she reminded me of my cousin Paige, actually!  I think she will connect well with Jack and will push him to his greatest potential.

As we drove Jack from the hospital to Nurses N Kids, I was thinking about February 17th; when the first MRI was taken of Jack’s brain– back when we thought the tumor was cancerous.  I remember sitting in the hospital chapel begging for just one favor- that they wouldn’t find metastatic drips from the tumor down his spine.  I only asked for one miracle, but I have gotten so many.  I really can’t allow myself to feel upset about the results of this swallow study today.  Still, as John put it, it is a parent’s right to hope.

There are a lot of miracles in this world, but they are miraculous because they don’t happen every day.  The rest of life carries on thanks to nothing so much as hard work.  And thankfully, if there’s one thing that Jack, Sam, John, and Meg Grotti (and the boys’ grandparents, family, and friends) are good at, it’s working very, very hard.

sept20142(And having fun, too.)

October 1 will see our next MRI.  With any luck that tumor will remain dead.  I will be sure to post an update around then, if not before.