Blog Overview

Byron has Cerebral Palsy (Left Hemiplegia) caused by a stroke before birth. In 2015 he developed seizures and a rare form of Epilepsy called ESES, neither of which responded to treatment with medications. On November 3, 2017 he had a Functional Hemispherectomy. He has had many other major procedures in his short life including surgery for exotropia in both eyes, tonsils and adenoids removal, Selective Dorsal Rhizotomy (SDR), Constraint Therapy, and heel cord lengthening. The recent posts are about the Hemispherectomy and what follows. Older posts about other procedures can be found earlier in the blog or by links in the sidebar.

Friday, October 11, 2019

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!

Tuesday, August 21, 2018

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.

Thursday, August 16, 2018

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.

Friday, February 9, 2018

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! 💖😁😍

Wednesday, January 3, 2018

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! 💖

Saturday, December 16, 2017

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:

Thursday, November 30, 2017

CHASA Family Retreat 2018

In 2010 we attended a retreat for families of children who have hemiplegia.  It was sponsored by CHASA, Childrens Hemiplegia and Stroke Association, a lifeline for us when Byron was first diagnosed.  Over 500 people descended on a town in Alabama for the four day conference.  100+ kids and teens with Hemiplegia, caused by stroke, attended.  Byron was three so it was mostly interesting for Bob and I.  There were lectures, chances to meet successful teens who had developed excellent strategies for school and college, and it was great to chat with other parents dealing with the same issues we were.  We always said we wanted to go again.  And this year we want to go for Byron.

We think it will be great for Byron to see so many children who are just like him. They also have a sub group of children who have hemiplegia and hemispherectomy so he will meet other superheroes just like himself!  This year they expect "hundreds" of kids, teens and adults with hemiplegia.

The retreat is from July 8-11 in Denton Texas which is outside of Dallas.  Ahh July in Dallas -  but they will have a pool :)