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! 💖