Bounce Back Day 2018: The Greenhouse

It has been four years since Jack’s surgery!

To celebrate Bounce Back Day and our yearly ritual of renewal, we took a trip to Longwood Gardens.  Under the oppressive February sky, our van drove past fallow fields. Starlings lifted as one like the blackened ghosts of leaves from ice gray grass, puddles like mercury briefly capturing their reflections.  Muted yellow spikes of witch hazel and freckles of lime colored moss seemed the only natural color for miles and miles. Then we entered the conservatory, humid as a winter barn, a riot of color.  A thick sensation assailed me like a midsummer scent of decay for a moment, and my hand went to my nose, confused, until my eyes fell on the ruddy lilies crowding beside me by the thousands.  Instantly, the perception of the scent changed into something pleasant.  No, Meg, not danger.  Lilies.  Remember?

The boys hurried to the children’s garden, run-walking so as to follow the letter of parental law with occasional backward glances, and I followed.  I wondered at the strangeness of it- that I can take this glass house of wonders, carved out of soggy, threatening February for granted.  I considered aloud what it takes to keep a place like this going.  The boys, however, were in its thrall and all that they saw glittered with the slick light of newness.  Water vapor that they can blow aside or fluff with their hands in intricate, strange patterns above the hidden pool beneath the children’s garden stairs.  The way that slate tiles turn dark when painted with water begs for a full investigation.  The flowers come in their favorite colors, as if made just for them.  We parents stand with them in paradise, and yet also outside of it- and we try to convince them of its stability, despite the other reality just outside its glass walls.  Despite the web of complex social contracts and systems, trusts and man-made innovations that chug and grind beneath the pretty walkways, all of it required to make this paradise thrive.

Medically, Jack’s past year can be characterized as a lengthy plateau.  We haven’t seen any really traumatic setbacks this year- no hospitalizations, no major illnesses.  Jack has experienced plenty of concerning rashes, fevers, some respiratory viruses and lengthy stomach bugs that have left us poised for action, racing around to rule out serious problems (is that rash a normal kid thing, or MRSA?  Is this week-long stomach problem just a virus or a sign of shunt failure?) While the woods we dwell in have been warm and calm this year, we are jumpy within them.  Perhaps we’ll always have the feeling that the shape we see out of the corner of our eyes is some rare and hulking danger.  We no longer trust that which we cannot see and instantly classify.

Jack continues to wear his speaking valve or HME during the day, but has not fully weaned off of the ventilator, despite our efforts.  He still requires oxygen and the vent frequently at night though he continues to use the AirVo many nights a week with success.  Jack had his fourth swallow study this September.  Because we observed that he was making a gulping sound when we asked him to swallow, and because he has increasingly demanded food and water at mealtimes over the past year, we had some hope that he was figuring out how to get food down, yet the study again showed no improvement.  While there is some hope that Jack may be able to have his trach removed despite a continued inability to swallow, this is a complicated mix of factors, and we remain uncertain of the path ahead.  Jack also had a new hearing test, which showed normal hearing in his left ear, and no discernible hearing in his right.  He was such a trooper at the test- which has now been repeated many times.  He was an expert at it.

If Jack is our hothouse flower, his teachers and nurses are the gardeners.  Nursing remains imperative to our family, and yet is a constant source of managerial stress.  We continue to rely extensively on home nursing to facilitate Jack’s ability to attend school, and to allow us to work during his frequent fevers and illnesses.  Delaware Medicaid is the vehicle which provides access to nursing, and so we have watched the national political landscape with regard to Medicaid with increasing concern over the past year.  We have a great team of nurses, many of whom are like family, though we did recently have to remove a nurse who worked with us for over a year from the case due to some flatly negligent behavior.  Jack has become aware of the relationship between his medical needs and this great staff of people.  He frets sometimes about what it will mean if his trach is removed one day.  Will all of these people suddenly vanish from his life?

Jack now attends a hybrid school program- heading to Christiana Early Childhood Center in the morning, where he enjoys a diverse and boisterous classroom of peers in a traditional preschool program, and Delaware School for the Deaf in the afternoons, where he gets speech and physical therapies and one-on-one attention from his teachers.  It’s the perfect environment for him right now, and his development is astonishing.  I have been especially amazed by his growing ability to count and recognize patterns, to write and sight-read simple words, and his verbal skills continue develop above grade level, and he loves word play.  Despite the effort that it takes to sustain this environment, our fragile boy is thriving in every way possible.  He even started gymnastics this year, and we couldn’t be prouder of him for working hard to strengthen his body and push his limits.  And, I think he’s proud of himself, too.

Sam doesn’t enjoy all of the benefits of this greenhouse- and he has not been able to attend preschool and reap its benefits as I would have wished.  I do find myself worrying about his kindergarten preparedness at times when I see the ease with which Jack can identify letter sounds and puzzle through simple mathematics concepts.  Yet, Sam is and has always been less a hothouse flower, and more like the forsythia.  Plant it anywhere and it grows, a little wildly and in unexpected directions, but no less dazzling and full of sunshine when its time is right.  And, being “out there in the world”, Sam has a much more sophisticated sense of managing interactions with peers than Jack- his shyness vanishes when others the same age are present.  Sam remains intensely interested in science topics- where things are in the world, how rocks are made, how weather happens, what makes a car go?  And he is creative!  He loves to play the “What if” game.  A recent back and forth looked like this:

IMG_20171018_190409380Sam: “What if our house was made of paper?”
Me: “Hmm… Then I guess it would fall apart as soon as it rained”
Sam: “Not if the rain was also made of paper!”

Sam’s art is one of his great loves and his skill has continued to evolve to the point that the “machines” he creates have become so fascinating that we decided to commission him to create the art for our newly-painted hallway.  I believe Sam has all of the ingredients to take off in Kindergarten, and in life, just as his brother does.

And for our family, I think we are proud of what we have built to keep Jack thriving, though it seems scarcely sustainable at times.  We will never stop living outside of the woods, outside of fear, but maybe that is just the human condition.

 

All this was new,
Was after-Eden.
No longer could
They sleep beneath
The trees, trusting
Branches not to break.

It was a habitation
They had to make:
Four walls and a roof-
A place to live,
A world inside the world.

–Excerpted from “To Build” by Gregory Orr

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December: Thanks for waiting for this update

Hello, all!  Sorry it has been a while.  Much has happened this fall, and there is much news to share (how could there not be, with two fast-growing kiddos in the house!?) I have taken up a new role at work, and thus have found that shifting sands and new projects of a kind that I have little prior experience with have taken up most of my waking hours and focus over the last few months.  That landscape only promises to intensify, but I am committed to maintaining my writing here- please be patient as updates may be sporadic over the next few months!

Jack had an MRI of the brain in early November, and I am pleased to report that it was clear.  There is no longer a great, gaping ‘cyst’ where the tumor had been, the ventricles are of a moderate (no longer swollen) size, and most crucially, there is no sign of a re-emergent tumor.  I was surprised, thrilled, and a little terrified when Dr. Walter informed us that there is no further need for regular MRIs.  He feels that given Jack’s tumor type, the greatest danger for reemergence is likely behind us.  It will be a strange thing not to get those nerve-wracking tests on a regular basis… and it will be hard to feel secure without being able to tell myself that a recent scan showed nothing.

Further shunt failures are likely for Jack, so there will certainly be MRIs in the future– just not regular ones.  I think this ushers in a whole new phase, and is really great news.

FullSizeRender (51)We had a more sobering visit just a week later with the neurologist who is now following Jack as a result of the April seizure.  Back when the seizure had taken place, an EEG (a test used to detect abnormalities related to electrical activity of the brain) was done.  At that time, we were told that there were some abnormalities with the scan- nothing serious.  I assumed then that this was likely because of the electrical storm that had been happening in his brain just hours before.  In November, we took Jack for his follow up EEG, and found that- while there was no sign of epilepsy (great news)- the scan did not show a perfect, untouched brain that is functioning exactly as any toddler’s might.  There are some impacts that are consistent with the kind of damage that his brain suffered.  I’m being vague here- largely because this is the first time that I have hit upon a part of Jack’s story that I feel I need to treat with some sensitivity… because I don’t know what Jack’s own feeling will be about sharing this information some day.  Our brains- their limits and their capacities- make us who we are.  This is a fact that I’ve struggled with my whole life; I know how important it is for one to make up her own defining narrative on the subject — so really, it’s up to Jack to decide when and how to tell this part of the tale.

IMG_2175We know that there will be some differences in the way that Jack’s brain works.  But we don’t really know what that will look like.  What I can say is that what I see at home is amazing progress- jumping, running, a sense of humor and curiosity, a temper, empathy, burgeoning communication abilities, sociability, and interests that are all his own.  I don’t see him really having trouble making his own way in the world- though a parent never stops grieving when their child’s way is harder than they wanted it to be.  Our neurology visit gave us a reminder of this hard truth, but it is just one small point of data in a sea of progress, and there’s not much that we can do with that data right now.

Jack has also let us know that he prefers to use his voice over his signs.  He’s figured out how to speak over his trach, so he is pretty vocal even without the valve.  One day recently, he got off of the ambulance at the end of the day and we noticed he wasn’t using his voice- he was signing just as if he’d never stopped.  It turned out that his cuff had been slightly over-inflated, cutting off the airflow to his voicebox.  He was nonplussed.  Just switched right back to his signs until we figured out what was up.  He and I also picked our signs back up at a recent, rather noisy event, when we couldn’t hear one another well.  It was gratifying to see him using all the tools at his disposal.   I’m really grateful that we invested the time and energy in sign language for Jack.  When he vocalizes, it is often very hard to understand him– particularly when he tries to tell you a lot all at once– but he can often get his point across fairly well.

Here’s a recent sample of Jack talking (with his valve on) so you can get a sense of how far he has come this semester!  For those that may not be able to understand him or to access the audio, here‘s a quick transcript.  (Sorry I didn’t have time to caption).  He was pretty hysterical over the word “cheat”, and loved saying it over and over.

Sam is ever more chatty.  Each day I am amazed at how quickly the gaps in his knowledge about the world are filling in.  (We had a half hour long, rather loop-like discussion of the weather recently.)  Here’s a recent Sam-rendition of “Santa Claus is Coming To Town”, with transcript here.  I think you can see just how hilarious it is to live with this inquisitive, unafraid spirit who is going to pitch in, have fun, and say his bit… whether or not the details are fully fleshed out.  Wish I had a touch of his confidence!  More to come soon on Sam and the holiday break.  I also hope to share some of my thoughts on the connections that I’m coming to appreciate between patient advocacy and my own line of work in information literacy in coming posts.  I’m also hoping to write more about work-life balance in the coming year.

Thanks for reading, and for bearing with me through the last long lag!

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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.

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 and Therapy Update

First of all- another clear MRI!!

Jack had two great appointments in January.  He visited our old friend, Dr. Walter in Oncology, and showed off all of his signs, his moves, his personality and sense of humor, and his attitude.  Dr. Walter showed us some of the MRI images of Jack’s brain, which is looking pretty amazing.

I always ask how the ventricles that house the cerebral-spinal fluid look, and if they are continuing to shrink.  It was not symptoms of the tumor that alerted us to Jack’s disease, but rather the symptoms of hydrocephalus, and hydrocephalus is a pretty big concern for Jack, even after all of these months, as it is being regulated by a prone-to-failure shunt.  Jack had some pretty significant hydrocephalus at the time of his diagnosis, which enlarged the ventricles of the brain significantly.  Now that Jack has no more tumor blocking the flow of CSF and has a shunt to help divert any CSF that may not be draining properly, I was curious to know if the ventricles are continuing to shrink down.  This was the first post-op MRI that showed no shrinkage.  I wouldn’t say that I am concerned about this- just curious really. We will continue to take any headaches or other minor symptoms pretty seriously.

We also had a very long appointment with Jack’s therapy team at NNK.  Overall, Jack continues to impress everyone and has surpassed many of the goals that we set for PT, OT, Speech, and Developmental therapies six months ago, with a few exceptions.  Jack still has some fine motor issues to overcome, his head is still markedly tilted to one side, which throws off his balance quite a bit, and he is not yet walking.  PT had the most to say, reporting that his feet are indeed still pointed outward, meaning that it is time for us to bring in yet another specialist to evaluate him for corrective orthotics.  Between the unsteady feet and the tilted head, the balance required in walking becomes hard to achieve, though Jack does amazingly well -he can almost run!- if he has his toy walker or an adult’s hands to steady him.

We also learned that our dude is now a seriously ornery toddler,  He doesn’t like to work very hard at PT and OT; he has found ways to pull the nursing team into his scheme to get out of hard work.  The therapy team reports that he has learned the power of ‘no’ and uses it pretty emphatically.  They actually have to set him up with a “non-preferred nurse” prior to group activities or his regular therapies if there is any hope of him getting work done.  It was an odd moment for me, learning all of this.  On the one hand, it was so thrilling to be talking about Jack as a normal, willful toddler-smart enough and resourceful enough to find a way to deal with life on his own terms.  On the other hand, it was a wake up call- a sort of “hello, you’ve reached a new phase” moment.  Jack is learning how to manipulate and tantrum his way out of things, so we have to be careful moving forward.

I learned that children who are medically complex often exhibit these kinds of controlling behaviors.  All day long, there are people “doing things” to Jack- popping a tube in and out of his belly for feeds, suctioning him, changing his trach ties, putting a ventilator on and off, etc.  All of that coupled with very frequent, very unwanted doctor’s visits, and you have a child who feels totally out of control.  I have no doubt that Jack’s lack of communication and mobility skills frustrates him tremendously.  Who wouldn’t seek ways to control their environment, to find some predictability, to set up boundaries?

Our new marching orders for Jack are to continue to work on communication (he has now added “caterpillar” and “mommy” to his list of signs), and to give him more control over his world.  Instead of handing him a toy, we are to offer him two and let him pick.  Instead of dressing him, we are to allow him to choose his clothes.  We must try to find ways that Jack can lead, rather than follow.  We must try to involve him in family chores (he loves throwing away old wrappers, etc).  In short, we need to channel this ferocious little mind that Jack is so very lucky to have kept intact.

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I hope we are up to the task.