The Beginning of the Journey

Yaraslovsky Terminal, Moscow; Our Story Begins

I never intended to take the slow train to Vladivostok from Moscow.  Unlike the Trans-Canadian Railway or the Orient Express, the Trans-Si...

Sunday, September 11, 2016

Khabarovsk Station; Pulling out Slowly as an Outpatient


September 19, 2016:  Anybody who has known Christopher since he was tiny knows that he has poor frustrational control--or, in the vernacular, when he has a meltdown, it is nuclear in proportion.  He was an incredibly colicky baby, a highly volatile toddler, and hasn't ever responded well to calming techniques or disciplinary action.  As he grew older, he didn't erupt as often, he became able to take direction from non-parental adults, and he recovered more quickly from nuclear mode.

When he began Math-U-See Gamma several years ago, he quickly determined he wasn't a very big fan of the videos.  "Mommy, he doesn't make sense.  But if you sit next to me and help me work the A lesson problems, I can do the rest of the chapter on my own.  I like when you teach me."  We continued watching the videos, I continued sitting next to him for A lessons, and I pulled out manipulatives as often as he'd let me.  But that broke down last year.  He refused to watch the videos, he didn't want my help for A lessons (or anything else), and he went ballistic anytime I brought out manipulatives or tried to redirect his problem-solving.  In other words, he'd completely lost the ability to be flexible in his problem-solving approach.  This struggle with schoolwork, coupled with digestive upset and headaches, is what purchased our ticket onto the Transiberian Railway in the first place.

This past April, we were at my parents' ranch and he didn't understand the fractions exercise he was working on in Khan Academy.  I rolled up my sleeves, tried to explain the concept, he again declared it didn't make sense, I tried again, he told me it would never work, I tried to take a different tack....meanwhile, his fists were balled, our voices were escalating, his carotid was bulging, and then his headache exploded.  My mother's comment was that she'd get a headache if she got that frustrated, too.  I now know, this was perseverative behavior.

What we didn't know then was that an AVM was sitting in his brain, hogging the blood his anterior cranial artery was supposed to deliver to his right frontal lobe.

One of the recommendations from neuropsychology for schoolwork is that he be taught to use multiple methods to solve problems to increase brain flexibility, promote frustrational control, and reduce perseveration.  So going back to our old math routine seemed like a good idea.  Today, Monday, was an A lesson day.  Perfect way to start the week, right?

Yeah, I was nervous.  

First up:  Expectation setting is key, he hates changes in his routine.  Always has.  So I made sure to tell him Sunday what the A lesson routine will be this year so he knew what to expect.

Math-U-See Zeta, Chapter 5, subtracting decimals with borrowing.  Subtraction with borrowing is something he’s always needed a reminder lesson for if it’s been awhile since he’s done it.  So I told him we needed to pull out the math models and model three problems on the floor after he finished watching the video.  He just wanted to do it pencil/paper “because I already know what to do!”  And, of course, this is the year he just flies through it and and is getting them all right with just paper and pencil.  But I felt like we needed to set precedent and establish routine.  It took me being really firm and telling him that if he continued working problems on his own, I’d just make up extras for him to model, but he did it.  No shouting, no balled fists, no bulging carotid, no headache spike.  He was even still in a good mood when we were done.

I tried to point out how awesome this was, but I basically got the, “My brains, his steel, and your strength against 60 men and you think a little head jiggle is supposed to make me happy?  Hmmmm?” reaction from the Princess Bride.


But just so you all know, this was really, really huge.  This wasn’t just a return to baseline, this was a step beyond baseline.


The kids playing sidewalk chalk while I supervise writing this post on a playground bench; Christopher is not currently allowed to be without adult supervision, but both the dog and the cat decided to help.










Christopher and I have different definitions of massaging his scalp gently in the shower.  But, 1 month after surgery, the scabs are now gone.  Stitches are beginning to dissolve.  Hair is even regrowing in the incision line.

Sept. 17, 2016:  Learning to walk again is hard.  Really hard.  Trying to return to normal is harder.  Because it isn't just about learning to walk.  It's learning to jump, to run, to do a bench pose, to stand on one leg without falling.  It’s stretching out and using muscles that haven’t been used at all in a month.  It’s trying to fit in with friends that can just go on a run or play soccer or play tag while you're limited to short walks and quiet indoor activities.  It’s being stuck at the top of the stairs for an hour because you’re awake, but your mom is at swim team practice with your older brother, and you’re still not allowed to do stairs without an adult escort.  It’s being lonely.  And without hope.  And scared.  

Christopher’s recovery so far has been amazing.  From an adult perspective, from the outside, looking in.  For him, he’s still in the middle of a nightmare, but he doesn’t talk to anyone but me about it.  Even I only get glimpses.  He says he’s just trying to forget it all.  So the boy who used to come curl up at my side at bedtime every night this summer and talk to me about his fears is gone.  He’s angry at me, he’s frustrated, and I’m not entirely sure he trusts most adults anymore.  Christopher is The Boy Who Lived.  If he hadn’t had a Chiari, if we hadn’t taken his Inova MRI to Johns Hopkins for a second opinion, if he hadn’t had a team that felt comfortable operating in the motor strip, we wouldn’t have found the AVM at all, we wouldn’t have removed it, it would have ruptured in the wild.  As adults, we can clearly see and understand all of that.  The child, no matter how brilliant, no matter how clearly he understands the facts of his medical conditions, has little insight into his treatment plan, let alone respect for his safety restrictions.  He only knows that everything is always worse than he expects.  That the pain never goes away.  That adults promise “at the next appointment, we will ….” and then change the plan.  He thinks that hope is pointless, because it leads to disappointment.  His neighborhood friends no longer ring the doorbell except to see if Alexander can play outside.  They’ve all gone back to school, and are spending their free hours soaking up the sun and fresh air and exercise.

Brain Therapy via Game Play, putting scientific discoveries/events in timeline order

None of this is normal.  We’ve been home from the hospital for two weeks.  I didn’t expect him to magically be better by now, I just didn’t realize how much pressure I would feel to look normal to the outside world while we’re still struggling just to survive each day.  He’s not in PICU, he can walk, dress, and feed himself, so everything feels like it should be homeostatic, not in crisis.  The reality is that this was the first full week of extracurriculars for my other two children, and our first week without family here to help.  So it wasn’t a stable week, a plateau from the curve we’ve been climbing since March.  It was yet another hill to climb.


For months I’ve heard that I’m such a strong and able person, Christopher couldn’t have a better caregiver to see him through this train ride. I’m not sure I ever felt as capable as all that, but certainly I was able to schedule the appointments, research all the options, bolster him through to surgery, and generally function through my week. I had a few massive anxiety attacks, I had to be careful what songs I listened to while driving. But now, I can’t shut down, can’t stop deliberating the slightest of details, can’t think about much of anything that isn’t related to getting off this train. I’m not really sleeping any more now than after I instituted a melatonin regimen to deal with the call alarms, bright hallway lights, and night-duty nursing calls of Kennedy Krieger, despite being in my own bed and a dark, quiet house. Going to sleep isn’t a problem, I have the exhaustion of more than 6 weeks averaging less than 3.5 hours’ sleep every 24 hours on my side. And thanks to melatonin, I can now sleep for one full sleep cycle, which ranges from 4 to 5 hours. But then I wake in a panic, thinking of all the things that need to be scheduled and researched, obsessing over safety restrictions and neuropsych evaluations hours before the rest of the household awakes and my day officially begins. My attention span is shot, I can’t read anything that isn’t brain-related, and even then, I’m usually too exhausted to stay awake for more than a few sentences. My whole neck went into such spasm after trying to do shoulder stands with my daughter Labor Day I had to break out Flexeril leftover from a dislocated rib several years ago. For the record, I’ve always been able to just pop into shoulder stands without a problem, and did so the last week in July. I nearly went to urgent care to make sure I hadn’t cracked a vertebral spine, I was in such pain, but decided it really was just soft tissue inflammation. Flexeril, a sport therapy essential oil mix, an epsom salt bath, and a massage undid the worst of the damage, but didn’t stop the insomnia, anxiety attacks, or crying jags. I have a new personal record of 17-hours for one continuous anxiety attack, something I haven’t really dealt with since passing my candidacy exam in graduate school. I scheduled an appointment with my PCP to discuss the insomnia, and my doctor diagnosed me with PTSD anxiety and insomnia. She says it’s not in my DNA to break down in a crisis, it’s just not something my brain would even consider four weeks ago in PICU.


So, our current situation is apparently stable enough for PTSD symptoms.  Yippee.

On the upside, renewed swim team practices for my oldest mean scheduled time and accountability for me to start working out again for the first time since the end of June.  Running on the elliptical and yoga for anxiety with my favorite YouTube yogi stop neck spasm pain for 24 hours.  My doctor gave me Ambien to do a hard reset on my Circadian cycles now that we’re out of the hospital.  My last crying jag was post-endorphin rush on the elliptical yesterday.  

Normal is hard.  Not unimaginable, but hard.  So for now, this is my theme song.


Mumford and Sons, After the Storm

And after the storm,
I run and run as the rains come
And I look up, I look up,
On my knees and out of luck,
I look up.
Night has always pushed up day
You must know life to see decay
But I won't rot, I won't rot
Not this mind and not this heart,
I won't rot.
And I took you by the hand
And we stood tall,
And remembered our own land,
What we lived for.
But there will come a time, you'll see, with no more tears.
And love will not break your heart, but dismiss your fears.
Get over your hill and see what you find there,

With grace in your heart and flowers in your hair.


Final OT Task--Complete the 3D Eiffel Tower Puzzle for Discharge!

Sept. 11, 2016:  Christopher has now been home a week.  He spent his last days at Kennedy Krieger Institute getting through therapies with a countdown, but when Scott arrived to drive us home, he didn’t rush out the door.  Granted, he was playing Mario Brothers with one of his KKI friends in the therapy center, so we went to grab lunch at the Hopkins cafeteria and then came back, at which point he insisted he finish his game of Uno with the staff.  But at noon, the therapy center closes for a lunch break and we were out the door.  He didn’t want to return to the floor to say goodbye to his roommate or friends, but he was definitely emotional and holding back tears as we walked to the parking garage.  I hadn’t slept well the night before myself—as much as I wanted to go home, I did feel as though we were suddenly being thrust into the wild.  KKI is a very controlled environment, from building temperature, to administration of meds, to therapies scheduled in half-hour increments 8:30am-3:30pm.  Our home, with a Labrador, two cats, a preschooler and pre-teen, and all the activities pertaining to each, is not.  And now we were bringing home a young boy who was desperate to return to being a normal kid.  And yet he had a whole lot of restrictions still placed on his freedom, but would be surrounded by siblings and a neighborhood of able-bodied kids.  I wasn’t sure how he’d handle that reality.  Or his new outpatient physical therapist, or the requirement he return to KKI every Friday for outpatient behavioral psych therapy.

Luckily, my best friend John Gipson anticipated it might be a rough week and arrived at our home only a few hours after we did to help us navigate our first week in the wild.  Having an extra adult around was definitely a godsend.  Both Sabrina and Sunshine are more clingy than usual, so it was nice to have him around to help Alexander walk the dog (and get Starbucks treats midway), and to play puzzles and board games with the kids while I was managing outpatient appointments.




Christopher’s first several days home were definitely exhausting, as showcased by the purple circles under his eyes.  We noticed months ago that you can tell how he’s feeling more by the degree of bruising beneath his eyes than by what he’ll self-report.  He understands better than anyone that his pain can’t really be managed by meds, so he ignores it as much as possible in order to attain what behavioral psych calls “functional pain”.  But if you then ask him how much pain he’s in, he has to focus on it in order to report a number on the 0-10 scale he loathes, which forces it back into the forefront of his attention.  No bueno.  Being away from nurses and therapists that ask how his pain is every few hours has definitely been helpful.  Sleeping in his own bed without interruption has, too.  As he got stronger at KKI, he started having the same problems sleeping through the midnight disturbances I had.  I made sure to complain about that in our exit reviews, as Kennedy Krieger’s nighttime protocol not only doesn’t match the policies in place at Johns Hopkins, it doesn’t match our current understanding of the importance of proper, uninterrupted sleep to pediatric recovery.  

During a normal school year, there are no fun screens Sunday 6pm through Friday 3pm.  During the summertime, even after completing a checklist of basic school, creative, active, and social activities, fun screens are limited to 2-3 hours a day.  In one of our last inpatient sessions, Christopher’s behavioral psychologist (BP), Rachel, felt that we should give him a checklist that includes schoolwork, chores, and therapies, but that he should have unlimited screen time thereafter as a reward for making it through the therapies he really detests (like BP)—particularly because he is absolutely not allowed to climb trees, play tag, play soccer, ride his bike, or even traverse the stairs alone.  So instituting a new Post-Op Screentime Rules posting was one of my first at-home projects to prepare for the week ahead.




Labor Day Weekend threw a mild wrench in making contact with and establishing outpatient physical therapy, but we managed to get an evaluation scheduled for Wednesday evening.  Christopher’s new therapist, Hannah, is pretty amazing, and was impressed enough at his evaluation (especially given the 20-page report KKI had sent over for her to read), that she told us she intends to start lifting some of his restrictions as soon as she gets a better feel for his endurance.  But there is already less 1-on-1 spotting, and more active exercises, which makes Christopher really happy.  He was less happy doing the evaluation, as his PT spent a good 30-40 minutes asking all kinds of questions about his early developmental milestones and pregancy/delivery status.  She was very surprised that Christopher was an early walker (9 months) and talker (75 words at 14 months) given the location of his AVM.  We then had PT itself Thursday morning, but not with his regular therapist.  Because we scheduled the appointment after 6pm the night before, and showed up for therapy at 9am, she definitely didn’t have time to read the 20-page history and asked me a bunch of questions about the symptoms which led to the Chiari I/AVM diagnosis.  She did get right to giving him exercises, so he wasn’t waiting around during this conversation, but he was definitely upset we were talking about it all to yet.another.person.  But the reason we are still doing pediatric neuro PT, is that Christopher’s body is technically perfect, if a little weak from limited use.  He’s in therapy to correct and strengthen the communication his motor and sensory strip make with his left side.  And that requires his therapists know the background of this year….in less than the nearly 20,000 words I’ve written so far, but in more than the 200 Christopher would offer.  He shouldn’t have to tell the story too many more times at PT, though, as we will work primarily with Hannah once we get into our regularly repeating appointments, not the holes they found for us to get into the system.

We originally wanted to find a behavioral psychologist closer to home for outpatient therapy.  But there is nobody in Fairfax County, VA on our insurance plan that doesn’t have a one-year waiting list.  Think about what it says about our nation’s mental health awareness and priorities that we make it so incredibly difficult for even kids suffering traumatic brain injuries to get help.  It’s ridiculous.  We could go to the outpatient clinic at the main campus of Children’s National, but honestly, it’s not that much closer than Kennedy Krieger in Baltimore.  And after seeing her a dozen times over the course of his stay at Johns Hopkins and Kennedy Krieger, my little introvert is finally starting to feel a little comfortable with her rather than openly hostile.  Since she knows behavioral psych is not his favorite activity, we spent our first outpatient appointment with Rachel on Friday working out a 10-point Behavioral Plan that Christopher helped compose under her guidance and then signed.  It has the concrete goals he has to attain in order to cease therapy.

Neuropsychology’s guidelines were for us to spend our first week as outpatients adjusting to the new routine and allowing his brain to rest, so no schoolwork, but the team did feel he was ready to begin his first quarter classes at Compass Co-op Wednesday with everyone else.  Christopher woke up in a lot of pain, complaining he hadn’t slept all night, and asking to remain home.  I’m fairly certain it was an anxiety attack about new classes, new teachers, and his new limitations.  But where before surgery, convincing him to go would have required first offering an extra privilege and then removing nearly all regular privileges in an escalating conversation, we were able to have two quiet conversations about the importance of attending the first day despite his pain.  I did offer an early return with Uncle John if it became too much.  And then we went.  He has chess, Minecraft, and STEM: Wall and Bridges (materials science and engineering for 3-4th grade), each one hour classes at 10am, 12pm, and 2pm.  I had emailed the director and his instructors ahead to explain his surgery and the potential for working memory and attentional control gaps.  But his teachers said he was fully focused in all his classes and had no behavioral problems.  Despite the fact that he spent his one hour breaks curled on a couch reading to combat his pain, his teachers said he was all smiles in class.  He has the same instructor for both Minecraft and STEM, and she said she’d have never known he’d just had such an intense surgery if I hadn’t said anything.

And now we are ready to begin our first week of school.  Again, our guidelines from neuropsych are a very gradual return.  I don’t have to change or modify our curriculum from our original plans, as they feel he is academically unchanged, we just have to slowly build to a full school day.  So this week, we do one subject, with no big tests or assessments or major assignments.  Christopher says we’ve taken so many weeks off school, he wants to begin with math before he forgets any more than he already has.  The beauty of homeschooling is that these accommodations are really quite easy to implement.  And since his checklist includes tasks like crafts, board/card games, sibling play, and PT homework, we’re already including exercises which will help him recover both his executive functioning and his fine and gross motor skills and speed.  Next week, we’ll add another subject.  And because we started schoolwork in August, with Alexander working on math and history while Christopher was in the hospital, I can give Alexander a relaxed schedule during the ramp-up to allow him time to engage in crafts and games with his siblings.  My hope is that this will bond us as a family and prevent resentment for Chrisotpher’s extra “free time”.

Most importantly, the circles under Christopher’s eyes are mostly gone, his face is generally relaxed, and he smiles and laughs a lot.  He is still getting stronger every day and he spends most of every day functioning through his pain, even if evenings often cause a crash.  Life is good.



Wednesday, August 31, 2016

Khabarovsk Way-Station, the Neuropsychology Evaluation

When I met with neuropsychology, Megan gave me the Cliff’s notes of their evaluation and diagnosis, as well as a list of modifications for Christopher’s first few weeks home.  His AVM had two primary feeding arteries.  One of them was his anterior cranial artery (ACA), which is supposed to feed the right frontal lobe.  It is therefore their hypothesis, after looking at both his pre- and post-operative scans and scoring the tests they administered that week, that the AVM has altered blood flow to his brain since birth.  Megan stressed that because he is so bright and socially well-adjusted, they had to search pretty hard to find the areas where he is weak.  The brain swelling he experienced post-op was therefore an extreme exacerbation, in their view, of cognitive deficits Christopher has had his entire life.  The right frontal lobe is responsible for executive functions.  

“Executive functions (also known as cognitive control and supervisory attentional system) are a set of cognitive processes – including attentional control, inhibitory control, working memory, and cognitive flexibility, as well as reasoning, problem solving, and planning – that are necessary for the cognitive control of behavior: selecting and successfully monitoring behaviors that facilitate the attainment of chosen goals.[1][2][3] Executive functions gradually develop and change across the lifespan of an individual and can be improved at any time over the course of a person's life.[2] Similarly, these cognitive processes can be adversely affected by a variety of events which affect an individual.[2]   (Wikipedia)

Most of the symptoms he had during the first week after surgery definitely fit in this definition.  What I’ve been calling short-term memory blips, neuroscientists call working memory.  The good news is that Christopher scores in the 99th percentile in verbal reasoning skills and in the superior range for nearly all the math and verbal skills they tested.  They still haven’t finished the official report, which BP will use to guide his weekly therapy sessions, so I have notes from our meetings, but haven’t seen his actual normed score report.  His attentional control scored 9th percentile, which is a mild impairment.  I know they also saw significant weakness in impulse control, visuospatial organization, working memory, perseveration, flexibility, and emotional control.  Some things, like impulsivity and emotional control, his therapists observed more during his stay at KKI than what showed up on the official evaluation.  Megan is cautiously optimistic that Christopher will make a full recovery to his baseline within a year of surgery.  And since the frontal lobe is the last part of the brain to develop at 25-28 years old, he has plenty of time to overcome any remaining deficits in order to become a fully functional and social adult.  But it does explain why he was the colicky baby to end all colicky babies, has always been prone to easy frustration and nuclear meltdowns, and has always had anxiety attacks.  I’m not at all sure I agree that he’s always had attentional control problems, though, or widespread impulsivity.  Scott and I do think, as we review the events of the last year, that many of those things came into play as his symptoms progressed and he entered crisis mode.  We have already seen an improvement in a few areas in the last couple weeks, which makes us hopeful that the simple removal of the AVM could be tremendously helpful for him once he’s healed from the surgery itself.  His behavioral psych appointments will help remediate the rest.  

Behavioral psychology is also in play to help give Christopher coping skills for his Chiari pain in the months ahead and to prepare him for the next surgery.  He generally doesn’t talk about it, but there were several instances during our stay that he told me, “Brain surgery has been so much harder than I thought it would be, I don’t know if I can do this again.”  To be clear, he does actually still want the Chiari surgery, and he’s never said he wouldn’t do it.  He was just very, very scared that he’d end up at Kennedy Krieger learning to walk again.  So I spoke with Child Life, his BP Rachel, the KKI attending physicians, and his physical therapists about his fears, and they have assured him that the Chiari decompression surgery is a very different, much easier procedure.  Not only is it skull base surgery rather than an open craniotomy, and therefore not going anywhere near his motor strip, sensory strip, or frontal lobe, but it technically won’t dissect brain tissue at all.  The neck muscles will be moved aside for the procedure, so he is very likely to need outpatient PT to strengthen those muscles and put them back into a normal conformation.  He didn’t believe me when I gave this explanation, telling me that since the odds of what has happened this surgery were incredibly unlikely, I don’t know that he couldn’t have an extremely unlikely outcome next time.  It’s not an illogical conclusion, so I couldn’t just dismiss it out of hand.  But he’s heard it won’t happen from enough of his medical team, that he says he no longer feels anxious.  The first surgery is done, he's walking easily again, and he is confident the next surgery won’t be so horrific.  He still wants to continue doing his anxiety meditation series, however, just in case his anxiety relief is due to his daily meditations.  Smart kid.  


Rachel is also planning on using her needle desensitization kit on Christopher to both alleviate his fear of IVs and arterial lines, and also so that he’ll allow us to attempt acupuncture for his Chiari pain.  His goal is that we can dial the pain back enough to take his baseline pain from a 5/6 down to a 4/5.  Level 8 pain is generally when he curls up into a ball and stops functioning, but the 5/6 he lives with most of the time leaves him an awfully short fuse for handling any daily frustrations that come his way.  The behavior psych department at KKI also has a mock MRI she intends to use to help Christopher prepare for his post-op brain scan that’s soon to be scheduled.  He has no problems at all with CT scans, which are silent and over in a few minutes.  But MRI machines are extremely loud and take 30 minutes (or more) of absolute stillness.  Between his first brain scan and his full spinal scan, the stillness is obnoxious but not a deal-breaker.  But spending half an hour in a very loud environment he knows will make his headache worse is rather frightening.  So.  The mock MRI it is.  

Tuesday, August 23, 2016

Khabarovsk Way-Station, Kennedy Krieger Institute




September 1, 2016:  The AVM surgical site causes more itching than pain these days.  Good in that he's nearly done with the scalp healing, bad in that there's nothing that can be done to stop the itch.  Christopher says the bone no longer clicks and pops, which means enough little bone bridges now extend from the piece they removed in surgery to the rest of his skull to secure it in place.  So that weird sensation is over.  There wasn't much visible swelling in the scalp after the second day, except when Christopher would probe his bald spot with his fingers.  Then it looked like his fingers were pushing into jello as the swollen tissue bounced and displaced--which creeped me out to no end.  That swelling is now gone, no movement when you probe his scalp.  Thank goodness.  The stitches haven't started dissolving yet, but the scar looks like it will be nice and narrow.

Christopher's incision site, Day 11 Post-Op

Before they went back home, Scott and I stayed Sunday evening and played hearts with Christopher.  The kid can nearly count cards perfectly:  lays the 10 of Clubs, Scott lays a diamond, "I thought the 6 of Clubs was still out there," as I lay said 6 of Clubs.  The twerp also prevented me from shooting the moon because he had the foresight to not throw his Ace of Clubs in an early trick--it was the one card that could stop me.  So.  The card shark areas of his brain are clearly intact and Scott is planning on taking him to Vegas after he turns 21.

Notice the grin.  Evil.Genius.

Christopher’s team meeting was yesterday, and I know from his social worker that they continue to be really pleased with the progress that he is making, but I am still waiting on the formal notes.  He is walking well enough that PT is working on muscle strengthening exercises as a warm-up, but spending most of his PT sessions walking increasing distances, climbing stairs, and playing games that work on his core balance.  He even rode a therapy trike yesterday.  He has also been cleared to walk to all of his therapy sessions rather than using the chair.  Tuesday he walked to all therapies in the morning, but was exhausted and went back to his wheelchair for the afternoon.  Wednesday, he walked all day, even going over to the Johns Hopkins cafeteria and back at lunch.  OT is also focusing more on balance and hand-eye coordination games, usually modified versions of activities like lacrosse, bowling, or wall ball.  OT Scott seems to realize how important physical activity is for Christopher and has been doing more active games this week than sit-down fine motor skills.  The main concern outside of ankle strength, at this point, is that he has inconsistencies in left side strength and balance.  He'll look so good doing a drill, you relax (even the therapist), and that's when a muscle blips and he loses his balance.  PT Amy says it's most likely to happen when he has to change his focus or someone starts talking to him.  So, focused walking is doing really well, but it's definitely not yet an autopilot activity for him.  OT Scott has also noticed that there is still significant weakness and drooping in the left shoulder muscles (everything attaching to the scapula), more so when they are challenged than when he is standing still.  He’s planning on giving me exercises for home to strengthen them, as he still feels that Christopher doesn’t need OT after discharge.



Oh!  He can do small jumps as of yesterday!  And he maybe sorta almost ran while holding my hand to catch an elevator at lunch.  Shhhhhh.  PT Amy says that, unassisted, Christopher has to keep both feet on the ground except for the small jumps, but she is clearing him to climb provided he has a 1-on-1 spotter at all times.

This all means Christopher has a lot of fun and smiles frequently in PT/OT sessions, but it also means he's just exhausted all day.  Now that he's off bed rest, the Chiari is triggering exertional headaches most of the time, where it had been mostly below a 4/10 in Bloomberg Tower.  He says the Tylenol he takes for surgical site pain does not touch the Chiari headaches.  This was expected, and it confirms that he'll still need the decompression surgery, but for now we're left with relaxation techniques, rest during breaks, and warm baths/compresses to mitigate pain at home.  It just sucks to see him wandering through his day with purple circles under his eyes.  

I've brought Christopher's headache specialist into the loop via email since we can't get him in to see her (or her to him) while he's inpatient at KKI.  She added 100mg B6 vitamin to his regimen yesterday to mitigate anxiety attacks, since Keppra is known to decrease B complex stores, but is otherwise keeping his migraine protocol the same for now.  She says the Keppra, in addition to preventing seizures, is offering some headache protection, and we'll just have to use the reglan/benedryl cocktail to rescue headaches for awhile longer.  He had a starter migraine yesterday (eyeball pain, upset stomach, frontal lobe headache), and giving him reglan/benedryl with his 8pm Tylenol calmed his stomach enough for a late dinner and kept the pain from escalating.  His nurse and I decided to call that a win.

Speech and Language Therapy moved beyond vocabulary and memory skills and tested reading comprehension using the CELF5 assessment yesterday.  He sort of groans when he goes, but he likes Ms. Kristy and does well in his SLP sessions.  She is a bit concerned about his handwriting, and since cursive/print transitions caused massive headache spikes in June, OT checked his handwriting out today.  Compared to his chem lab writing sample August 12, there’s no noticeable change in letter formation or word spacing, but he is probably slower than he had been.  Yesterday was the last session of Neuropsych testing, and he definitely did not like that.  He did it all and worked hard, but wasn’t as animated as in his other sessions and didn’t try to hide how bored he was.  I'm sure it doesn't help that he spent an hour Tuesday doing memory work with lists, numbers, and figures, both testing and exercising short-term memory gaps.  It was explained to us by a good psychologist friend that, as tedious as neuropsych testing is, it’s also training his brain and helping him move forward.  So, for this week, neuropsych has been his school.  He liked that explanation, but told me, “But I usually like doing school….”

The memory gaps are definitely still there.  I notice them most if I leave, as I get a text 30-45 minutes later asking where I am.  So instead of just telling him where I'm going, I text it to him, have him repeat it back to me, and I'm going to start putting it on his message board.  He still sometimes accuses me of lying when I make reports to his team about aspects of his progress, but I think it's decreasing in frequency.  I meet with Neuropsych this afternoon to get the full assessment of his testing, so I should learn what the precise deficits are in memory and other skills, as well as the recommended modifications for schoolwork and life.

Behavioral psych is was a lot better yesterday even though I still don’t think he actually likes it.  They are the group tasked with giving him coping skills for the behavioral deficits left by the post-op swelling as well as the emotional trauma of what's happened to him.  It's really hard living in a fish bowl.  He has no privacy anywhere, no quiet places, he's incredibly homesick, and he's required to have a spotter for even the most basic tasks.  Luckily, we only have two days.  I don't know how families manage these conditions for months, except that we all manage the impossible when our kids need it.  Christopher still has a lot of anger about what's happened to him and he's really scared this could all happen again after his next surgery.  I need to speak to behavioral psych about this, I'm not sure it makes sense to keep hammering home "coping skills" without addressing the underlying, very real, frustrations, anger, and fear of his immediate situation.

We are still moving along for a discharge Saturday.  The nurse case manager here is working with me to transfer his care to outpatient facilities that will be set up for his first appointments next week.  She is also making certain to pre-authorize everything through insurance.  It looks like his only regular therapies will be physical therapy and behavioral psych, although follow-up appointments are already in place with rehabilitational medicine and neurosurgery in September and his whole care team in December.  Children’s Therapy Center does pediatric neuro PT and is only ten minutes from our house.  Behavioral psychology is harder.  The ones in private practice don’t do insurance at all and our insurance company doesn’t answer the phone number we have for the necessary pre-authorization.  Inova technically has psychiatry services, but only for existing patients.  Children’s National has a satellite location in Fairfax, and is a great group, but they have a one year waiting list.  So Christopher will stay with his current BP here at Kennedy Krieger and we’ll just have to drive to Baltimore once a week until his appointments start spacing out.  Insert rant on how abysmally we handle mental health services in our country here.  His rental wheelchair has arrived, I am sitting next to it as I type.  Mike, the equipment manager, will check it out today and Amy will have Christopher use it in therapy this afternoon to make sure it is properly adjusted for him to use.


So.  Two more days.  We are technically still in crisis mode (more on that after I get debrief by neuropsych this afternoon), but it feels pretty stable.


Jail break!  We loaded up the Suburban with people, animals, and luggage to try to bring home to him.

August 27, 2016:  I went home last night for the first time since surgery ten days ago.  I wanted to sleep in my own bed again, and Alexander and Sabrina both declared that they wanted to come visit Christopher this weekend, so I went home to pack while Scott stayed with Christopher for the night.  We decided that since he can't come home to see his precious animals, we'd bring them to him.  Sunshine, our yellow lab was thrilled to be going on a car trip.  Alfred, his cat, not amused.  But we came, we got our 6-hour pass to take Christopher off Johns Hopkins Hospital property, and we took him to Homewood Suites.  As thrilled as he was to see his animals, the chaos of the outside world (and his preschool sister) made him rather anxious to return to Kennedy Krieger after just four hours. He's also decided he really needs a parent to stay with him in the hospital, despite how much he loves his LaoLao--he certainly barely said goodbye anytime he's stayed with her before, even when we visited Texas in May and he did okay the other night, even though he was up much later than usual.


August 26, 2016:  Christopher's Steering Meeting.  Everybody was already in the room when we were ushered in, seated around a long oval conference table, with extra chairs tucked in the corners, and we were suddenly faced with his entire care team at once.  I knew he had a lot of people working with him, but it was rather overwhelming to see them all together, as it was all the primary physicians, clinicians, therapists, graduate students, and residents, or about 1-2 people per specialty.  Scott said something about it being like my candidacy exam.  The analogy is pretty apt.

The meeting started with a date:  everyone feels quite confident that Christopher will be discharged at about 11am Saturday, September 3.  He's made so much progress this week, and his initial insurance authorization was seven days, so I was actually surprised they're planning on keeping him through next weekend.

Everybody is still really pleased because Christopher is making daily progress even though they'd expected it to start being weekly at this point, even with the inpatient rehabilitation regimen.  Medical is pleased with his progress and will bring in pain management to discuss changing his migraine protocol once we get to 14 days post-op.  

Physical therapy is very pleased because he can walk over 300 feet with only spotting assistance and can walk both up and down stairs step over step as well.  He still lacks proper motor control of his ankle joint (dorsiflexion), however, which is causing hyperextension of his knee, risking injury to both the knee and hip joints.  PT Amy has tried lots of tricks to get him into an orthotic to hold the foot in position out of therapy while she works on strengthening it in session, but it causes too much irritation to his skin.  As a stop-gap measure, he has kinesio tape triggering dorsiflexion, which works well, but not as vigorously as an orthotic would.  PT feels pretty confident that he will not need the wheelchair in the house upon discharge, and that they will issue us a rental chair for long outings and co-op only.  They even think he could probably manage co-op on his own two legs physically, but worry it would overly drain him for full participation in his classes mentally.  She does feel that he will still require intensive PT as an outpatient, starting at 3x weekly.  Even though his deficits are fairly straightforward, she would like him to remain in a pediatric neuro PT practice during the intensive PT cycle.

Occupational therapy says that Christopher has really regained full fine motor control and strength in the left hand, with only minor weakness in the left arm, and OT Scott will not be recommending him for outpatient OT upon discharge.

I can't photograph KKI staff, but this photo shows his difficulty keeping both arms level, particularly on an unstable surface.


Speech and Language Processing was not present Friday, so we do not have a full report.  We do know that on the 0-21 year old vocabulary assessment test, Christopher holds the Kennedy Krieger top score and registers a 20-year old's vocabulary.  We know his listening skills are at least on par for his age level, but do not yet have the official report.  Regardless, he is now released from SLP care.

Neuropsychology says that Christopher scored well on the initial assessment, but because they know from talking to him and from examining his latest ITBS scores, he is a very smart child, they are spending the next week performing an extensive, fine-tooth battery of his cognitive skills to see what deficits are still presenting from the trauma of surgery and post-op edema.  He has progressed so rapidly since leaving PICU that it is not appropriate to use the Rancho scale to mark his progress and they have to look much deeper for specific issues.  I have completed my "homework" which was to fill out neurobehavioral assessments based on my memories of January 2016 Christopher and an extensive history of his developmental milestones and infantile behaviors (e.g. colic, age of walking, age at first word).  January 2016 Christopher was chosen because they wanted to choose a point prior to the headaches changing his behaviors...they say there is a distinct possibility the AVM was also at play.  Looking at his pre-crisis history is important not just to create a baseline, but also because the executive functions he struggled with most prior to the trauma are most likely to be affected now and to take the longest to heal.  Neuropsych will also examine all his brain scans, both before and after surgery, to figure out the pathology of his injury.  They are optimistic that, 12 months from now, any remaining cognitive deficits will be very subtle.  They will follow up at regular intervals during that period.

Behavioral psychology is going to continue using the feedback they get from everybody else to help Christopher cope with his current physical and cognitive limitations so that he has a "coping toolkit" upon discharge.  I believe they will continue working with him as an outpatient, but honestly, this meeting was only allotted 30 minutes, and it was hard to keep up with my notes.  I'll follow up at his next BP session.

Recreational therapy says that Christopher is doing well in both group and individual play sessions, but they are wanting siblings added to the mix so they can see both how Christopher interacts with his siblings and whether they need some help learning to play in ways that are safe for him.  Given that a) we homeschool and don't want Christopher enrolled in Baltimore City schools, b) education only works with the kids one hour each day, and c) Dr. Ahn very specifically says no formal lessons for Christopher for the first three weeks post-op, he will spend that time doing additional recreational therapy.  This is perfect, as they use the same play modalities I would be using at home during this "he gets a break" (Ahn's words) had he not needed inpatient rehab.

Christopher's nurse case manager is just exceptionally pleased with his progress.  She's seen a lot of AVM patients over the years, and she made a point of saying how incredibly lucky he is that it didn't rupture "in the wild".  It would have been devastating.  Seeing the progress he has made both physically and cognitively in the last ten days, and having Christopher mostly back as "Christopher", we are appreciative of that.  

So.  We have seven more days in rehab.  And we will have another steering meeting Wednesday to discuss most of the details of discharge and his operating instructions at home.  We have already been told to hide all bikes, scooters, skateboards, and soccer balls until after the Chiari surgery.  When we told Christopher the news, he did pretty well with his discharge date, but he was very frustrated he can't ride a bike or play soccer with his friends.  Honestly, there's no way he has the balance for that now, but he thought he'd be fine.  TBI logic is a whole other realm.

This fun gift produced a lot of giggles!  We signed him out of KKI to take the tunnel system over to the Johns Hopkins Hospital cafeteria for dinner while we told him about the Steering Meeting.  He thought it was very much a Percy Jackson Labyrinth kind of thing.

August 25, 2016:  We arrived at Kennedy Krieger after noon on Tuesday, so Christopher's first official day of evals was not until Wednesday morning.  Breakfast was off because his stomach was offended enough by the smell of hospital pancakes he developed dry heaves in short order.  Zofran to the rescue!  And a Fuji apple from home, some blueberry kefir Scott smuggled in for us, and half a graham cracker later, we were ready for his first appointment.



Occupational Therapy is the process of learning the daily skills you need for life and job.  So it includes mundane tasks like getting dressed and bathing, but also, since Christopher us a student, fine motor skills of the hand.  So OT Scott came in to help Christopher dress in real clothes for the first time since surgery.   The zipper and button didn't present problems, so Christopher can brush his teeth and get dressed with just some balance help.  Just as we finished that, Christopher's wheelchair arrived.  It was sized just for him, and seems quite comfortable.

In the therapy center, play reigns with Megan.  I'm not sure what was being evaluated, but Christopher played Uno with the play therapist while she asked him questions about his favorite about sports, activities, and games.  My understanding is that his other therapists will give her skills they'd like him to work on, and she'll find games/instruments/crafts that meet those skills during his individual time with her.  But the therapy center is also where Christopher can go in his free time to play with other kids on activities of his choice.  Yesterday, he was all about Mario Brothers on the Wii, as video games are an option in the afternoon and evening.  He has made a point of knowing where in his Therapy binder the Therapy Center schedule is so that he knows what times crafts, puzzles, games, etc are.



Next up, Physical Therapy.  Christopher's regular PT is Amy, but yesterday he was doing evals.  He was in a great mood and willing to do attempt everything she asked.  His chattiness does make it difficult to keep him on task (more on that later).  At the very end of the one hour evaluation, you could see that he'd used up all his energy.  His face blanched, he laid back in the PT mat, tiny muscles shaking, and put his hands to his eyeballs so he wouldn't cry as he commented about "all the things he can't do."  Christopher can now walk short stretches on his own, or even stand unassisted for about 30 seconds, so he's been exuberantly telling us he's nearly ready to go home.  Being faced with everything that's week, one muscle group at a time, was hard....both physically and emotionally.  But it was only a 2-minute blip before he was wheeled in to the OT room.

OT Scott spent his eval time measuring grip strength and assigning Christopher small tasks with his hands that required precision, spatial awareness, pincer grasp, etc.  He got to sit in his wheelchair the whole time, so no muscle overload and his mood was perfect.  We did have to remind him several times not to play with the buckle before we got the message through, impulsivity is definitely at play (more on that later, too).

The last morning session was a Speech Language Processing session with Kristen.  He was able to do all her tasks perfectly in that session, so if short term memory blips still exist, they are very subtle.  He was also able to demonstrate good recall after listening to a short story and could parrot it back for her.

After the morning session was 2 hours' free time.  Despite describing some very uncomfortable symptoms in his head and a level 7 headache, Christopher refused oxycodone.  He really doesn't want to start puking again.  But he did accept Tylenol/reglan/Benedryl, which appear to help.  He didn't eat much at lunch, even though he said he was starving.  And then he curled up with his book until Child Life came in, saw him, and offered to rebuild his bed fort.  Christopher happily crawled inside and shut us out.  I'm so glad they appreciate his need to shut out external stimulation in his downtime.

After dinner last night, Christopher couldn't wait for the therapy center to reopen for evening free time.  He hasn't met a lot of kids here yet, since he couldn't leave his room until he got his wheelchair.      There are approximately 25 patients in the pediatric rehabilitation unit, ages 0-21.  His roommate is 16 and recovering from a car accident.  There are several babies, who are adorable as can be, and pretty much everyone in between.  As we had hoped, this seems to be really good for Christopher, as he is surrounded not just by other children, but by children who are also handling major medical hurdles.  It's normalizing, he's felt very isolated this summer because he doesn't know any other kids struggling with such huge obstacles--and the kids part is important.  He as told me several times that it's normal and expected for adults to have lived long enough for major illness, disease, or accident to occur.  But kids are supposed to be healthy.

Christopher woke up with a calm stomach this morning, but still has a very limited appetite.  I gave him Kefir, and he's also getting a lactobacillus regimen with his other meds, in order to rebuild his gut microbiome.  I think it's highly likely that between the IV antibiotics he received to prevent meningitis (definite good) and the many rounds of vomtiing and diarrhea, his gut is now fairly sterile.  We've had a minor hiccup this morning with his left foot.  His big toe woke up Tuesday morning and he was very excited to be able to wiggle it.  Yesterday, he regained the ability to wiggle the other four toes slightly.  Putting on his tennis shoes yesterday was no problem, although the left foot is still more sensitive to discomfort than the right and it took awhile to adjust the sock to his liking.  Today, he has much more wiggle in the toes and the ability to dorsiflex the foot into a 90* angle.  Unfortunately, now that his toes are less wooden, they are curling as he puts them into a shoe and can't uncurl them once the shoe is on.  PT Amy is also concerned that the limited dorsiflexion of his left foot is causing hyperextension of the left knee and could lead to damage.  So she is fitting him with an orthotic to wear outside of PT to prevent injury, although he'll work in therapy without it to strengthen the areas involved.

Today is another day of evals and tomorrow is the Steering Meeting where we hear the results of his evaluations from each team.  That is also where an initial discharge date will be proposed and where we'll get a checklist for each of the skills he needs to have onboard in order to go home.  The goal is for him to not need the wheelchair to navigate our house, but to be comfortable using it whenever goes outside or on errands while he continues his therapies on an outpatient basis.  Updates may start slowing down now that he is stable and in a routine at Kennedy Krieger, but I do intend to do a post on after his Steering Meeting.



The afternoon sessions included repeat sessions with PT and SLP. We also saw Natasha from Neuropsychology for the first time.  Where neurosurgeons work with what is physically wrong with the brain, Neuropsych is concerned with all its chemical and molecular pathways.  In her words, "We look at the chemicals the cells spit up during an injury and what effect that has on the brain."  Even though Christopher's night nurse send hospital PT had told me he is behaving exactly as one would expect in a traumatic brain injury scenario, this was the first, official diagnosis of TBI.  Basically, even though his AVM ruptured in a controlled setting in the OR, the AVM resection created enough swelling in the frontal lobe, that he was exhibiting many of the cognitive and emotional deficits of a stroke or other TBI in addition to the left side hemiparesis.  They spent a lot of time asking about Christopher pre-surgery, and even pre-Stroke Watch 2016.  They also asked lots of questions about his behaviors since surgery.  The fidgets in PICU, inability to distinguish time, anger rages, perseveration, inability to focus on a task for more than a few minutes, inability to understand why he was in the PICU and couldn't go home, all align with a Rancho level IV.  He now appears to be in a Rancho level VI, by my estimation (they're still in eval phase).  Everyone agrees that he has progressed rapidly in his cognitive recovery, and they think he will make at least a nearly complete recovery.....but it could take a year.  Because of the complexity of the brain, the behaviors affected are due not just to the areas affected by the AVM and its removal, but also the ones he had the most trouble controlling prior to Stroke Watch 2016.

Christopher's final session was with Behavioral Psychology.  Lara has been his primary liaison during the eval phase, but we are now moving into treatment with Rachel.  They primarily use active techniques and biofeedback to help Christopher develop coping strategies for getting through his therapies, which are difficult both physically and emotionally, and for handling the immensity of his condition and recovery.

Figure 1--Introductory materials on Traumatic Brain Injury, the Rancho scale, and the expected behaviors associated with each level on the scale.

For me, the impact of the first 36 hours at Kennedy Krieger has been huge.  I've been given names for behaviors I was seeing in the PICU, things I felt must logically be the result of the surgery and subsequent swelling of the brain. Unfortunately, the PICU day nurse mostly looked at me like I'd grown a third eye when I told her what I was observing, leaving me to think that Christopher was "just" dealing with the stress of waking up unable to walk.  Certainly, that plays into it.  But his initial behaviors and their progression are following a very defined sequence he has little control over.  As parents, friends, and family, we need to redirect his inappropriate behaviors towards acceptable alternatives, but without judgement or discipline.  Patience is critical.

I'll may do a post dedicated to Traumatic Brain Injury and Christopher's early progression through the Rancho Scale.  I spent a lot of time yesterday telling our social worker (yeah, we have one of those, too, to help guide us--mostly me, as primary caregiver--through this labyrinth), neuropyschs, behavioral psychs, and nurses that we should.have.been.warned.  I very specifically asked Dr. Tamargo at our pre-op authorization appointment what to expect beyond the left leg deficits they were anticipating.  I even called out vision problems, attention deficits, and memory gaps because I had read in my research that they are common post-craniotomy.  Tamargo waved me off and told me that since they weren't operating in those regions of the brain, we wouldn't see any of those symptoms.  I also sent an email to Drs. Ahn, Groves, and PA Stephanie asking for details on what to expect during recovery so that I could adequately arrange for family help during his recovery with our other two children.  That was the first time we were told that in very rare circumstances, the hemiparesis could be severe enough to warrant inpatient rehabilitation.  Nobody ever said that cognition deficits were possible, let alone expected.  I told them I'd have gladly paid an extra co-pay during our pre-op authorization visit to meet with Neurospych, and that it really needs to be part of the standard practice.  Apparently, it is with every kid undergoing brain surgery for epilepsy, but the other neurosurgeons aren't yet on board with this approach.  Even if they didn't think it likely Christopher's brain would react as though he'd actually had a TBI, the second he developed near-total left side hemiparesis, I feel they should have known the cognitive deficits were coming, and called in Neurospych for a consult.  I should never have had to suffer through his anger rages, time dilation, memory gaps, and perseveration without knowing it was a NORMAL process for a patient with an AVM in the frontoparietal lobe (fancy talk for straddling both his frontal and parietal lobes).  The frontal lobe is responsible for executive functions like emotional regulation and impulse control.  The parietal lobe handles sensation and emotion.  He has edema in both.  His first CT scan showed residual blood from surgery was sitting on frontal sulci as well as in the AVM cavity, but the neurosurgeons just said, "We see a little blood leftover from surgery, which we expected."  They didn't tell me that when there's blood in the frontal lobe, TBI symptoms will present.  The good news is that he has progressed through the Rancho scale so rapidly, that it won't really play a role in his NP therapies.  The cognitive deficits he has are subtle, more so because of his incredible intelligence, and both NP and SLP know that they are going to have to go way beyond the baseline tests to find and treat him at this point.  The hope is that his recovery will be so complete, and the remaining deficits so subtle, that it will not affect his ability to function in the larger world.

So, that is the current status for our life in the fish bowl.  Everyone here at Kennedy Krieger is, indeed, amazing, its reputation is deserved.  Having kids around has also been really good food.  But the nurses' station dings with every call button pushed, where Johns Hopkins Hospital proper only sends call button alerts to staff phones.  Christopher's roommate is in a lot of pain and therefore requires lots of attention at night.  Between the extra staff visitors and the call button alerts, I'm not sure I slept much at all Tuesday night.  Last night, I took two Benadryl and medicine to calm my gut.  I also shut the door completely, which staff kept closed when they weren't in the room.  That helped, I got a fairly decent night's sleep.  Luckily, Christopher sleeps through all of it and has woken in a great mood.  He is up, dressed, teeth brushed, and reading while he awaits breakfast.


August 23, 2016:  We had a small blip this morning, because Christopher was still so nauseous from last night's vomitpalooza that he wasn't interested in food.  His pain management team had told us he had to eat and drink to move to Kennedy Krieger today. Luckily, they were happy he just kept an apple and some water down.  And Zofran, drug of wonders, perked him up quite a bit.  Scott's parents drove up with Alexander and Sabrina so they could visit him a bit while we were awaiting discharge.  

Our favorite neurosurgery PA, Stephanie, came to talk to us about his progress thus far and the plan for the future.  The Chiari decompression is still on the table, but because the next three months are critical for getting Christopher back to his baseline prior to hemiparesis, we definitely won't be doing the next surgery during that time period.  He'll have a follow-up in a month with both Drs. Tamargo and Ahn to monitor his neurosurgical progress, and an MRI at 3 months post-op to visualize his brain.  That is also when Dr. Groves wanted us to check in with her for a Chiari followup.  In the meantime, it is up to Christopher to work as hard as he can in rehab during his sessions, and to rest when he's not.

I packed up the room and then....it was time for the IV to come out because his transport team had arrived!  You can use the tunnel system to walk directly from Bloomberg Tower to  Kennedy Krieger, and they apparently did that until last year.  But someone decided it was better to transport patients via ambulance.  So here you go:


 We are now safely ensconced in his new room, #313.  The hospitalist pediatrician, his Physical Medicine and Rehabilitation Therapy (PMRT) physician, his nurse for today, his physical therapist (PT), the medical equipment specialist, the financial rep, his social worker, the child life specialist, a graduate student, the nutrition tech, and his nurse technician have all come to visit us since our arrival.  Whew.  And that doesn't include everybody.  He has been all smiles and incredibly friendly with everyone.  I'm not sure he ever stopped talking.  I'm not sure if it's his general "I'm in a hospital, they're going to do something to fix me" euphoria, or the swelling on his brain, or....Christopher is not generally this chatty, especially with new people!

Trailing the main herd, we saw the speech therapist, as well.  New word for the day: perseveration.  "In psychology and psychiatry, perseveration is the repetition of a particular response, such as a word, phrase, or gesture, despite the absence or cessation of a stimulus, usually caused by brain injury or other organic disorder."--Wikipedia

It hasn't happened in a few days, so hopefully it was just a short-term effect, but the speech therapist just named this behavior for me.  Christopher speaks so well, I didn't think he'd need speech therapy.  But she will also diagnose and treat perseveration, short term memory lapses, attention span deficits, listening.....These are precisely the deficits that, combined with Dekadron rage, made PICU loads of fun.  He'd ask a question, I'd answer, he'd repeat it exactly, I'd rephrase, he'd repeat, I'd try to redirect, he'd repeat.....it was weird and frustrating and scary all at the same time.

This is his Escape from Johns Hopkins Hospital Face

And now he's sitting, reading comfortably.  He finished House of Hades, figured out the house wifi to download Blood of Olympus, and is trucking towards the finish of the Percy Jackson saga.