News on Friday

All of our meetings with Byron's doctors were pushed up to early this week (this morning via Telehealth and yesterday in NYC) so his case could be presented in an epilepsy conference this Friday.  In this conference the doctors will come up with the best course of action.  Byrons' surgeon will call us with the results of the conference Friday afternoon.  They are still keeping next Wednesday, July 27 as a possible surgery date, whatever type of surgery that may be.  

Byron LOVED his week with Ryan and Regina and niece Charlotte.  He especially loved The Weekend concert in East Rutherford. Byron went with a young man he met in Coding Camp. 

Byron helping Charlotte down the stairs.

Surgeon’s Office Called

Today Dr. Feldstein’s office called and we have a telahealth appointment next week on the 21st at 3:45 pm.  When I asked what this call was about the secretary didn’t know. She put me on hold and found out from the nurse that it was to discuss surgery. So there is movement!

Byron reports that coding camp is going well. It is being taught by very bright 18 and 19 year olds. Byron was put in the advanced group. All that prep Byron did with his Dad learning Python together has paid off. Byron seems very proud of himself. 

We had a lovely weekend with my brother and his girlfriend Alessia.  

Holding Pattern

As the summer unfolds it is a time of waiting.  No-one has gotten back to us about next steps so we just have to be patient.  (I have tried calling of course)  Byron is tolerating the medications remarkably well and seems to be just fine.  He starts a Python Coding Camp in Montclair New Jersey next week.  He will be staying with his brother Ryan and Regina and our granddaughter Charlotte in their lovely new home in Upper Montclair. 

Byron's next big summer event was to be a two week overnight camp called Frost Valley.  I called today and let them know that he might not be attending.  We are hoping that there will be movement by then and this can all be behind us.  

For the Fourth of July we had a lovely visit with  Uncle Steve and Aunt Ellen, Byron's grandmother Charlotte and extended family including Bryon's little cousins.  Byron had tons of fun swimming in Lake Norman.

Back in His Happy Place

Byron is so happy to be home. He had a very restful and long night sleep.  He’s had great snuggles with Max. His friend is coming over this afternoon for a relaxing visit with barbecue from the local smoke house. 

He also saw an Osteopath this morning who lives here locally. She is truly gifted and I believe she helps him tremendously.   

And it’s a gorgeous, sunny, mild day  A nice pause between now and all that comes next. 

GOOD NEWS! Going Home Today Part Two

We have a way forward!  Just had an excellent meeting with Dr. Feldstein (I LOVE FaceTime) the wonderful neurosurgeon who did Byron's initial surgery.  There is so much hope now!  He doesn't know yet why or from where the seizures are happening but he is determined to make them stop. And soon!  There are several pathways forward:

1) The DTI specific MRI that we had yesterday might show a missed connection.  This missed connection can be fixed by a laser ablation procedure.  Not even an overnight in the hospital!

2) The DTI doesn't show anything so they proceed to an SEEG.  This is tiny implants through holes in the cranium, minimally invasive, and these readings will tell the surgeon exactly where the seizures are coming from.  Once they know (usually takes 1 - 4 days in the hospital) on the same hospital stay, they can go in and remove this seizing tissue.  Should be minor pain and not a long hospital stay.

The best news is that the surgeon said "I'm not going anywhere this summer so I want to get this done!"

Hallelujah! All the prayers and blessings from all over the world and from so many dear friends and family have supported us while we get the answers that we needed.  Grace abounds.

Going Home Today

We do not have complete seizure control and a definitive plan to move forward but there is not much more we can do here. So we follow up in two weeks with his neurologist, hope the neurosurgery team has ideas, and we wait. But Byron seems alert and not too overly compromised by the very strong medications so that’s great. We thought he might be pretty out if it. But other than being a bit sleepy he’s alert and steady on his feet.  

He’s very very happy to be getting home to his video games, his dog Max and the rest of his summer. So are we.  But we leave with a nervous undercurrent. I want those five years seizure free to continue for the rest of his life. I want another permanent solution. May it come and come quickly. A lifetime of seizure meds is not our best option. Onwards! 

Mornin’

 

Byron doesn’t want us to catch any seizure activity because he thinks that will make him stay longer. So we are watching him like a daddy and mommy hawk. Luckily he has a nice smile 😃 

Still In The Hospital

It was a long day without a lot of movement. Byron is being rehooked up to the EEG leads again with the understanding that we still have not achieved any kind of real seizure control. We will speak again to the Nuerology Dept in the morning to see how everything looked overnight. 

Meanwhile Byron now has to go through a procedure he really dislikes, which is having tiny electrodes reglued to his head after they were just removed this morning.  

We did learn that the MRI this morning, the second this week, was a very detailed look at where in the brain the missed connections might be, if any. Maybe we’ll hear more about that tomorrow too. The overall good news continues to be that all seizure activity is originating from the disconnected side. 

Byron’ spirits, despite all, remain better than ours would be. ❤️

Visitors!

 Denise's brother Jeff and Bessy the therapy pup. 💕 No other news yet.

New Day New Room

Today Byron was disconnected from the EEG leads to see an opthomologist in another building.  In order to get there he had to travel in underground corridors more scary than any movie he said he's seen!  He’s had three seizure episodes this morning already so we really hope they rehook him up to the leads. In a few minutes he goes up for another MRI. In the meantime they have a new room. With a window. Much nicer!  

All is Quiet?

Even with all the new medications the seizures are not under control. But the hospital is very quiet tonight so even though the EEG machine is making crazy lines showing that his brain is having a non stop electrical party, Byron remains asleep and at rest. You can really see a lot on FaceTime.  Kudos to whoever invented this! 

The brain/ body is strange and wonderful.  Hopefully we will  have more news tomorrow. We were told today that we may be here a few more days. I agree. I don’t want them to release him until we have a real plan. 

Medication One Not Really Working

The first medication they put him on was Keppra and at least this seemed to stop or slow the clinical manifestation of the seizure, meaning the eyes locked to the left.  So that eye movement is not happening now which is good.  But the subclinical, the electrical discharges in the brain, have not abated.  This is very worrying.  The doctor called them "cyclical seizures", originating from the frontal lobe on the disconnected side. 

So they are going to add another medication Vimpat.  He will be on Kepra 1000mg twice per day and Vimpat 100 mg.  The surgical team is going to meet and consult, but not until tomorrow.  We will have some idea of what the surgeons say about next steps then.  

Bob is tired but he's resigned to the fact that they will spend at least one more night in the hospital.  The medicines are affecting Byron now, he's very sleepy and kind of out of it.  This is why I REALLY dislike seizure medicines. There is no way around the side effects.  More soon...

The Seizures Return

 Sorry in advance, this entry is LONG. 

 

It’s been a banner year for Byron.  He graduated 9th grade from CCHS,  a collegiate private prep school with top marks as well as college credits in Writing and Spanish. YAY!!!

 

The next day after school ended, he started to complain of headaches upon waking.  They were severe enough that he needed to take Advil and stay in his room until they dissipated.  Then he started to complain of something he called “fatigue”.  He said he was having fatigue and that it was severe.  But when pressed he said the fatigue was short and came and went. This was suspicious but we weren’t sure really what he was talking about.  The headaches became so severe that Bob and Byron went to the ER at Morgan Stanley Children’s in NYC on Saturday June 18, to have them checked out.  The on-call doctor was worried about hydrocephalus.  This is an increased pressure in the side of the brain with the hemispherectomy surgery (right) caused by buildup of fluids. This can actually be fatal if left untreated. After 7 hours in the ER and an MRI with DTI contrast  - using this technical terms for my records   - they found no evidence of Hydro so they let them go.

 

Headaches continued.  “Fatigue” continued.  On Monday June 20, Bob was teaching Byron to drive at the college. I was in the backseat.  Bob said, “Make the turn here into the parking lot”.  Byron said, “I can’t I’m having fatigue”. I explained that you don’t usually just have sudden fatigue and asked him what else is happening? And that’s when he turned to the back seat and I saw it.  Both of his eyes were locked to the left.  He was conscious but he was having the classic focal (partial) seizures that he has been having on and off since he was a baby.  These are not the seizures that precipitated the hemispherectomy.  That was ESES (electrical status epilepticus in sleep), an extremely rare form that exhibits as constant subclinical seizures.  ESES was causing him to regress developmentally.  

 

After getting a few more of these episodes on video (they were happening every fifteen minutes), Monday evening I called the Columbia doctors answering service.  I spoke to a lovely neurologist who told us that we need to come back to the ER.  There was no rush but to arrive to the ER Tuesday morning, June 21.

 

So off Bob and Byron went again (so glad Bob is retired) and I stayed home to hold down the home and work fronts.  

 

My position is permanently remote so it is perfect!  There is so much good fortune and Grace in everything that happens in our lives, in all these situations. Even through the outer circumstances seem difficult, everything aligns to make dealing with them very easy.  For example we don’t have to worry about insurance.  Everything is fully covered because of Byron’s Medicaid (we never see a bill). This is not so for many children. Our son and daughter-in-law Ryan and Regina, now live very close to the city with a direct train, so the car could be left with them and the trip could be made without driving and parking in NYC. Bob is retired so he can fully take this on.  It’s all good! 

 

 

They finally admitted Byron.  It took them nearly eight hours to get a room from the ER but Bob and Byron remained in good spirits.  When I called they were watching “Jaws” without sound.  

 

When they finally got Byron hooked up to the EEG at around 5pm they noticed he was having what they called “Cluster Seizures” seizures that happen one right after the other.  AT 6 they gave him 1000mg of Keppra via IV, and then at 10:45 pm they gave him Ativan 2mg via IV.  Byron slept well.  Bob did not. There was a child who was having a hard time overnight so there was constant sound.  They made funny clown noises at the front desk to sooth the child (Children’s hospitals are amazing)  but Bob was kept awake by the crying and the clown sounds. I should say that they are not on the epilepsy floor - not sure why. The epilepsy floor is pin-drop quiet.  I do hope Bob asks about moving.

 

In the middle of the evening last night I emailed Byron’s surgeon to let him know what was going on.  I got a short email this morning that he would try to stop by the room.  This morning, I was able to be on speaker phone in with the doctor on call (not a neurologist).  Apparently, all the seizures are arising from the disconnected right side. She was not a nuero so she couldn’t give us any more detail.  Hesitantly I say, this is good news.

 

There are three things I see coming and questions we will ask when the Neuros come around about 11. 

1)    If these are all coming from the right side, was there a missed connection that you couldn’t see on the MRI? Sometimes even if there is tiny bit of tissue left connecting the right to the left, this makes a successful bridge for the seizing side to affect the “good” side.

2)    If you determine this is the case, is another surgery on the table?

3)    Is an “anatomical” hemispherectomy an option?  I have communicated with several Mom’s of kids who had to have the entire disconnected brain removed from the skull cavity as it just couldn’t be trusted in there to stay. This has stopped all seizures. Byron’s was a “functional” hemispherectomy where the brain is left attached to the blood supply. There are more risks to this procedure however, including higher risks of hydrocephalus.

4)    If we try medicines, what are the side effects of being on multiple seizure medicines for something that can be remediated surgically.  Byron failed three medicines, Keppra, Trileptal and Onfi,  before his surgery (failure means they don’t work as expected or cause terrible regression or behavior problems). Frankly we are not that eager to go down the “try and see” with multiple strong medicines.  But let’s see.

 

To be continued…

 

Tendon Transfer

 On Thursday May 5 at Maria Fareri Children’s Hospital in Westchester, Byron underwent a Green Tendon Transfer, elbow release and some additional hand and wrist surgery on his left arm.  For the first time, among all the various surgeries and procedures he has had, this surgery was Byron’s choice.  

 

Last month Byron saw Dr. DelBello to discuss his scoliosis.  Byron’s pediatrician wanted Byron to be looked at because almost all children with Hemiplegia have some sort of scoliosis.  The doctor was not at all worried about the scoliosis but remarked that he could do some surgery on Byron’s left arm to make the placement more natural and the hand more relaxed.  Dr. DelBello said it would be largely cosmetic, but it might give Byron a bit more functionality in that hand.  Byron was immediately eager to have the surgery if it could be completed before summer.  With Byron’s great luck, we were able to secure a date where the cast would be off before mid-June.  After the cast is removed Byron will need 12-20 weeks of therapy twice a week to ensure that the new placement remains and to tease out some more functionality.

 

The surgery was a success!  The surgery was late afternoon. All told we were at the hospital just under 6 hours including recovery time. The anesthesiologist gave Byron a nerve blocker before he woke him up, so his arm was numb until about 4 am the next morning.  Then the pain really kicked in.  He was on Motrin, Tylenol and opioids for the first day.  Today we will no longer give him the opioid.  He seems to be doing fine.  It’s pretty uncomfortable but Byron thinks it was still worth it.  Before and after pictures will follow.

Waiting for the Surgery

The Beautiful Hospital - Very clean!

After the surgery, waiting for him to wake up.  He woke with a start and was VERY grouchy!

Home an happy with a very late dinner of Taco Bell.

The next day - brave and smiley as ever!

Ablation

Sweet Byron, who has lately been a very healthy guy, will be having a heart procedure called an ablation on Tuesday August 24. In February of this year (2021) he developed tachycardia, a condition where his heartbeat would reach about 245 beats per minute and last up to an hour. This has happened a few times since then.

Dr. Silver, the Pediatric Cardiologist at Morgan Stanley Children’s Hospital in NYC, assures us that the procedure is straightforward and has a 95% success rate in teenagers. (Success means the episodes cease and do not reoccur). Byron will be in the procedure room for 2-4hours with a recovery time of 4-6 hours. He should be released that day.

With everything Byron has gone through health wise, this seems like a blip, and still - blessings are much appreciated. He starts his new high school on September 8 so we would like everything to be terrific by then.

Quarantine Goals – Couch to 5k

The last time Byron, Bob and I were out in a crowd of people was Sunday March 1 for the Washington Heights 5K (3.11 miles) run in New York.  Byron ran it with his brother Ryan and finished it quite respectably. 

And then the pandemic began in earnest.

As we quarantined at home, even though it was relatively cold outside, I encouraged Byron to continue his running training.  Byron had mentioned that he might want to run track next year at school so training would be important. Every few days Byron would go out and run with the dog. One day I went with him.  I found out his “training” consisted of running full speed for about 100 yards and then stopping.  I knew that if another 5k or longer was in his future, we needed to develop a proper training regime.

I found an app called C25K which stands for “Couch to 5k.”  It promised to get you from sedentary to running a 5k in 8 weeks and what’s more, it was free!  I decided to not only encourage Byron to do the program, but that I would do it as well.

I ran track while in school but always the fast, short sprints.  I had tried to take up longer runs many times, but like Byron, I would run for 100 yards and then give up.  Now I was going to give it one last try.

Byron and I started the program on May 1, just as we were getting the most intense cabin fever after 6 weeks of lock down.

On our first day we were both euphoric.  It was so fantastic to be outside moving our bodies under the wide blue sky and just being with each other.  If you have a 13-year-old, you know how hard it is as a parent to spend any meaningful time with them in this digital age.  So this first outing was full of win-wins.  We talked.  We walked for 5 minutes, ran for 90 seconds, walked again and on like that.  The running part was tiring, and after the short runs we were both so grateful for the walks.  

Each week the training program upped the ante.  Byron and I both have apple watches so we could run the program on our watches.  The program would tell us via the watch, when to run and when to walk.  One day the program surprised us by introducing an 8-minute run in the middle of the week.  We both thought it was a mistake but sure enough, it was upping our game.  It went on like this for a few weeks. Along the way, I had many setbacks.  Not having run like this, ever, my knees ached, my ankles ached.  I almost gave up at least three times.   A couple of times we repeated a week.  Byron never seemed to have any problems and he was patient with me.  Finally, I found the right combination of knee “sleeves” (laced with some heat producing elements and mild support) and a single ankle wrap that alleviated all of the pain and discomfort.  We were now moving briskly through the program.

The eighth and last week was about to begin.  I looked at the map they were giving us for our first 23-minute run and realized that even by the end of the week, we would not really be at a 5k.  I wanted to be sure we could make it all the way.  Byron and I traced a solid 5k on the map, and at 6 am one morning, even before the app was calling on us to run such a distance, we took a leap and ran the course.  And we made it!   We ran our first 5k.  From then on, we ran without the app, and now we run a 5k before breakfast three times per week. We no longer speak on our runs, we both have our music, but we smile and cheer each other on.

One of the most rewarding things for me is watching Byron run ahead.  

He is a bit faster than me, yet even with his slightly awkward hemipalegic gait, it is a wonder to behold.  Flashing backwards 13 years to that fateful diagnosis day, wondering if he would ever talk, walk etc, I could NEVER have imagined I would be running with my 5’7” thirteen-year-old with the deep voice.  And running an entire 5k race three times per week!  

After our first 5K Run

Byron continues to be a wonder and I am so grateful that he is taking us on this great journey with him.

Pandemic Thoughts

This morning as I was making my bed, a wave of sadness swept over me.  I thought: here we go again, another day inside, dark times around the world with no end in sight.  And then very gently, a quotation bubbled up inside “This is the day the Lord has made. We will rejoice and be glad in it.”  I don’t usually think in Psalms, so I sat down and let its message wash over me.  And in that reflection, I realized, This IS the day the Lord made.  This particular day, in the middle of a pandemic, is still God’s perfect creation, a glorious day full of wonder.  How I rejoice and be glad in it will depend on how I choose to approach it.  What will I learn today?  How will I find beauty?  How will I hold on to the sweetness of morning meditation?  How can I serve more fully?

Then I remembered when I was pregnant with Byron, my Spiritual Teacher Gurumayi gave me a red bracelet that said “Choose Happiness”. So I went to look at it. As I was remembering the joy of that interchange, the day she gave it to me,  I realized that these times right now, are the exact times when I must choose happiness.  Even when it’s really hard.   

If I look for it, it is there. The birds in my yard are so happy right now.  They are flitting around building nests, preening in the sunshine.  The squirrels are happily munching on seeds from the feeder.  My dog is snoozing in a warm patch of sunshine.  Perfection.  Happiness.  

Byron is flourishing in his virtual school.  He continues to be on honor. role, is healthy and strong, and a typical 13 year old. Our house is warm, comfortable and easy to be in for long periods of time.  We have abundant nourishing food.  And I am so spiritually renewed by the satsangs live streamed from the Ashram where I offer service. 

I realize that I also can pick and choose what I focus on in the news.  There is so much goodness everywhere right now.  Heroes are being made from these times.  True leaders are emerging. The creativity of the musicians, artists, actors is staggering.  And the sweetness of calls and Zooms with friends and family can’t be beat.

I was taking a walk with Byron the other day and I was truly enjoying the sun on my face.  A feeling of warm bliss overtook me.  I hadn’t remembered being so present to myself and my surroundings on a walk in a long time.  And on that day I realized that I am changing. I am slowing down. I am appreciating the tiny movements of life in ways that I hadn’t so much before.  I am appreciating my family, good health, and moments like these.

So onwards! I will Choose Happiness.  Every day, Each day, This day!

Another Article on Hemispherectomy

This just published today in the New York Times!

How the Brian Can Rewire after Half Removed

Good Article about Hemispherectomy from The New Yorker

I'm glad I didn't read this before Byron's surgery.  It's the most detailed and graphic article I've read about Hemispherectomy.  It's from 2006.  Most people don't know that Ben Carson was a pioneer in this field.  From the article:

"No brain surgery is as dramatic as a hemispherectomy. “A hemispherectomy is the opposite of everything you are taught in neurosurgery,” Jallo told me. “You are told throughout your residency training to preserve the brain, get what you have to get, do your work and leave, but with this you have to take out everything along the way." 


New Yorker Article - "The Deepest Cut - How Can Someone Live with only Half a Brain"

Brain Surgery Recovery...There is so much unknown...

The folks who started the Brain Recovery Project (amazing folks we got to know at last summer’s Hemikids conference)  just held a major meeting on hemispherectomy and other brain surgeries for epilepsy. It was groundbreaking as it included medical and science professionals as well as parents.

I am amazed at how little is still known about cognitive and behavioral outcomes after this surgery.  When we asked about Byron after surgery, “will he walk, talk?” all the doctor would say to us is "we don't know - probably."

 Here’s why...there is so little research about outcomes after epilepsy surgery. Yet more and more of these surgeries are being performed.

Here is the link to info about the meeting/conference.  It looks like it was a great step forward.

https://www.brainrecoveryproject.org/research/functional-impacts-of-large-resective-disconnective-pediatric-epilepsy-surgery/

Byron Excels in 7th Grade!

As we approach the two year anniversary of Byron's hemispherectomy, we were never more certain of it's success than last night at Byron's 7th grade open house.

November 3 marks the two year anniversary of  the surgery and of Byron being seizure free.  November 3, 2017 was the date when they disconnected the right hemisphere of his brain and changed him forever.

Just before the surgery we received a call from his 5th grade teacher.  She told us he was unteachable and could not learn.  Two years later this same teacher is his mentor in the LEO club where Byron does volunteer work for his school's community service program.  Last weekend Byron was a waiter at a benefit for a child with cancer.

Yes Byron is seizure free, but he is also more verbal, more social, makes great eye contact and can hold a back and forth conversation with more than one exchange.  And what is most remarkable is that he can focus.  Every teacher since kindergarden  has talked about his lack of focus and limited attention span.  Yesterday as we approached  Byron's math teachers, Byron's most challenging subject, we expected to hear the usual, "The problem is he rushes, can't focus etc."   This was the case even last year.

As we sat down, the first thing the teacher said was, "Byron is so great.  His class participation is amazing. Whenever we ask a question we can alway rely on Byron to raise his had and try to give the answer."  She went on to say "And Byron's FOCUS is incredible!  He can really stay on task."

Bob and I both shook our heads and said, "Wow! That is really quite remarkable."  Both math teachers asked why we would say that.  So I took a deep breath and told them the abbreviated version of Byron's story.  Both teachers had moist eyes and one said that she had chills all over her body.  They were so grateful that we told them.

It seems that Byron has made the transition to middle school with great aplomb.  In his progress report he is getting above 80 in all classes, including math.   The other remarkable thing is that he is getting a 97 in PE!  We met his gym teacher who is a truly wonderful man.  I said to him that for a child with a disability, gym can be torture.  The gym teacher was clear that Byron is doing wonderfully.  He tries everything and when he can't do it the teacher makes modifications. We also learned that there is an adaptive PE program, but Byron excels so much in regular PE that they have kept him there.

Every teacher we met said how kind and happy Bryon is.  The assistant principle said how much he enjoys seeing Byron in the halls as he is always smiling.  Again, this was not so before the surgery.  I remember Byron's 4th grade teacher saying she wished Byron would smile more in school and be happier.

Any doubt we had about this school are completely gone.  It is absolutely the right place for Byron.  And we are so very happy to see and hear how well he is doing from all these fresh eyes.  In many ways we weren't even aware of how far he has come, as the change is incremental to us.  But seeing it reflected back last night was quite remarkable.  So many blessings!

Demonstration Child

Today Byron was the demonstration child for a large gathering of Physical Therapy professionals/students at the Center for Discovery in Hurleyville.  He delighted the students by singing songs for them while he was being treated.

Byron sang an excerpt from the opening of Sponge Bob the Musical at the end of the session.



And finally, one of the therapists attending today, worked with Byron in Ithaca when Byron was four. She let us know about the death of a very special person: 

RIP Kathy Schlough - 1952 - 2018

Kathy was Byron's first therapist after his diagnosis.  She had been the head of the Physical Therapy PhD program at Ithaca College and had just left there because she missed working with children directly.  She was an invaluable guide, friend and mentor during the early days of Byron's diagnosis.  She was an amazing artist and we have two of her paintings in our home.  We were stunned to learned that she died from cancer in May of this year at 66.  Dear Kathy, you will be missed by the hundreds of children and their families for whom your calm and steady presence was a great comfort.

The Journey is Almost Over

We had our 10 month check up after Byron's hemispherectomy.  This is the first time we have seen his neurologist since the surgery on November 4, 2017.

She reviewed the MRI and the overnight EEG and confirmed what we suspected - Byron is seizure free! At least for now, and hopefully forever.

We are going to begin to ween off all medications starting today so that by the one year anniversary of the surgery, he will no longer be on any seizure medicine.

Then we will do one more overnight EEG to confirm that even without medication, he is seizure and ESES free.

She also asked several things of us: if Bob and I would speak to other patients and parents going through the same thing, if Byron would speak to a large conference of nurse practitioners in a few months, and if Byron would consider being in one of the commercials for the hospital called "Amazing Things Are Happening Here."  We said we would be willing to consider all and to stay in touch.

She also told us that because of Byron, she spoke to the director of the hospital about being more aggressive in letting people know that the hospital does this type of surgery.  Last year we told her that when we were first looking for hospitals for this surgery, Columbia never came up on list-serves, parent groups or seizure blogs.   She said then, that she wants to change all that, and today she confirmed that the hospital was moving in that direction.  That's really great news, because Columbia really is a good place to have a Hemispherectomy.  And in partnership with Blythedale for rehab, it makes it very easy to go through the whole process.

Byron Made Honor Roll!

There is so much good news it's hard to know where to begin!  Byron made Honor Roll this quarter!  There will be a ceremony at the school on February 21 at 9:30 am where all the honor roll kids will get a special certificate from the Superintendent.  I really didn't think this day would ever come, even without the surgery.  Byron was getting anywhere from 35 -65 on most tests last year and through this fall until the surgery.  Since the surgery, his overall grade in math went from 60 to 90 percent.  English and language arts went from 61 to 85. Truly amazing - way to go Byron!

Byron also had follow up appointments this week with both his neurosurgeon and the epilepsy specialist.   Both were incredibly pleased at the way everything is going.  Byron got a "gold star" from the neurosurgeon Dr. Feldstein.   The Epilepsy doctor, Dr. Ackman, thanked Bob and I profusely for our perseverance and fearlessness.  We thanked her for sticking with us and taking us through to the end.

Byron is so much happier overall.  Every day since the surgery he shows new enthusiasm and improved social skills.  We had a follow up appointment with his Physiatrist, the doctor who prescribes his braces and manages the leg and arm spasticity.  She was shocked when Byron came in and immediately told her a joke.  Byron has always been largely uncommunicative with her until now.  Byron continued by dancing and singing for her and answering all her questions.

Byron has always been a great kid, but now he is truly Byron Gamer PLUS! 💖😁😍

Homework Heaven!

For the past two years, homework was the time of the day I truly dreaded.  I knew how smart Byron was but it wasn't appearing in his school work and even less in our homework sessions.  He could not follow a problem that had more than two steps and word problems were impossible.

For example, trying to explain the steps of long division, with it's multiplication, subtraction and precise number placement was almost impossible.  Just when I'd think he got it, he would completely forget the logic by the next problem.  And he could not keep focused on the task for more than a few seconds. The whole exercise, repeated daily with different sorts of math and reading, were incredibly stressful and very sad for me.  And likely worse for Byron.  But Byron was always adamant about completing his homework so we slogged through it.  Often at the end of a session, I was exhausted.

You might ask why I cared - long division who cares!  These kids will just use computers or ask their Google Home!   But his lack of ability to follow sequential steps was a clear indication of how the seizures where effecting his brain.  I thought that if I kept at it, if he kept at it, some how it would ultimately be good for his brain.

Fast forward to today.  Today was Byron's first day back to school after the surgery.  When I picked him up he was smiling, happy and at ease.  This was a HUGE change!  Before the surgery, when I picked him up he was surly and difficult.  Today he was smily and friendly.

And then we had our homework session.  It was two pages of long division.  It has been at least two months since we worked on long division and I readied myself to have to teach it again.  But Lo!  Byron remembered the rules.  And he approached his homework with ease and focus.  He made the small mistakes that any child would with such a complex task, and his handwriting is still miserable, but it was like I was working with a different child.  We got through all the problems without frustration and he remembered the logic and the steps.  And, he could do things in his head that he could not before.  For example when we were working on how many times 52 goes into 367, I taught him how to estimate.  I asked him, "How many 50s there are in 100?" He said 2.
"Ok then how many 50s are there in 300."  He said 6 - right away!  So then I asked "How many 50s are there in 350?"  He said with great enthusiasm. "6 and a half! "  I laughed and understood how his mind came to that logic but we NEVER could have gotten that far before.  It was brilliant and exciting and I was exhilarated.

I am in awe of how this surgery which took half his brain, has made him whole again.  Byron seems to now have access to his heart and mind in ways that were not possible during the last two years.
And we all couldn't be more pleased! 💖

At 6 Weeks Post Surgery

It's amazing that it has only been six weeks since Byron's surgery.  He is doing so well it is quite remarkable!  We have not seen any evidence of seizures which is amazing in and of itself, but Byron is SO much more present, alert and happy.  I imagine that, for him, there was a constant static or interference going on in his brain due to the malformation and spiking occurring almost constantly in his right right hemisphere.    Now, with a quiet brain, he can connect more with his heart, his good feeling and hopefully his intellect.  We have had a hard time getting the tutor here, she has missed two weeks already, but she is scheduled again to come on Monday.  I hope to hear from her that his academics are improved as well.  Byron has told us in the last two years that he "hates" school. I believe this is because, once the seizures started, it was simply exhausting to focus.

Here is a little video interview done today: