Thursday, October 24, 2019

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/

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!

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 ...