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!

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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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.

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!

Sorry It’s Been Awhile!

Today was Jack’s follow up MRI.  We are again hoping for a clean scan and no more signs of either hydrocephalus or the tumor.  Jack seems to have forgotten all of his hospital manners– he fought like heck today and didn’t want any of those scary nurses and doctors doing anything to him!

Since my last update, much has been going on for Jack and for the rest of us, too!

image Jack was recently evaluated for language skills as part of the follow up to his hearing loss diagnosis.  His receptive language skills were judged to be “age appropriate”. This feels like a stunning victory to us!  Jack listens, responds to his name, finds humor in things, plays and seeks to engage with others.  He responds to commands such as “give Sam a hug,” or “show me the doggie”. He clicks his tongue or makes gurgly coos to get our attention when he needs help, and he points at pictures and then to the corresponding real-life object in order to label and categorize.  He spontaneously waves “bye bye” to people.

Jack now has six signs under his belt:  Please, Wash, Kitty, Daddy, Doggie, More, and Phone.  He’s made up a sign for “swing” (he points and then rocks back and forth in pantomime).  He’s working hard on the signs for “mommy”, “baby”, and “open” and “close”, but hasn’t quite mastered them yet.  I really enjoy learning sign language and challenging myself to incorporate as many signs into my reading aloud or singing songs with the kids as possible.  It’s fun to learn something new in the same way and at the same time as the kids.

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Jack isn’t walking yet- progress in this area is slow.  However, he is now able to wobble-walk for considerable distances with just one hand being held for support.  I’ve also caught him standing independently for a few seconds once or twice.  I don’t think that walking is far away, now, though he will have to really work on his balance before he is able to get there.

The most exciting thing to watch now is the emerging relationship between Jack and Sam.  They are begining to play together more and seem to find their game of under-the-dining-room-table peekaboo to be the most hillarious pasttime of all.  They can also be found pushing one another on a little toy plane through the house.  When Sam is being pushed by Jack, who uses the toy as a walker, you can hear Sam chiming “Thank you Jack” as they go.  (Though it sounds more like “gank goo Gack”.)  They occasionally steal from one another, grab each others’ things and get angry when one gets his way and the other doesn’t, of course.  But Sam says hello and goodbye to Jack every morning, and Jack (who doesn’t quite understand that one has to use one’s arms to give a proper hug) lays his head on Sam’s chest affectionately when he sees his brother.  When one of the boys takes a tumble, the other is often there with a hug, a gentle head-pat or a toy to offer.  I’m really proud that they seem so empathetic toward each other- at least for now!

Sam’s language capabilities continue to explode.  He asks simple questions like “Mommy go?” parrots every language-esque sound he encounters, and his word count is currently somewhere over eighty.  Some of our favorite words and phrases that Sam uses right now include Octopus (“ah-boo-dis”), Bicycle (“Bi-tic-oh”), Noodles (“Nu-nulls”), and probably our ultimate favorite:  Cold (pronounced “CoOoOo” with full, shivery vibrato).

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Sam has also picked up some new names:  Tucker (“Tah-coo”) and Rachel (“Ba-tcho”), which of course refers to John’s brother and his wife, who have recently relocated to Delaware!  It feels great to have family in the area.  Right now, as they get settled into new jobs, etc., they are staying with us which has been a great help.  Jack has an enormous crush on Rachel, and plays a shy game of hide-and-seek which is really cool.

We have some further check ups with Oncology later this week to learn the results of our MRI, and on Monday of next week a full meeting with all of Jack’s therapists to learn how he is faring.  I promise I will try my very best to get back to you, my dear friends and readers, with an update as soon as possible  As always, thank you for holding Jack in your hearts!