Blog Overview

Byron Pratt, age 10, has Cerebral Palsy (Right 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. Older posts about other procedures can be found earlier in the blog or by links in the sidebar.

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 :)

Wednesday, November 29, 2017

PT and OT Begin

Byron had his first full day with no fever to speak of.  He went to 99.1 later in the day which is not bad, so I really hope we are getting on the other side of the fevers.

Byron started Physical Therapy and Occupational Therapy today at the Center for Discovery.  He will have 4 weeks of therapy there:  2 sessions of PT per week and 1 session of OT per week.   The Occupational Therapist said that she has worked with several children after Hemispherectomy and, like many others, said she could not believe how well Byron is doing.

Byron appears to be a bit looser in his hip and leg though, which is causing his toe to turn in rather dramatically.  They will work on this of course, but we are not happy about that.  They also said that he has lost most of the gross assistive function of his left arm, but they feel confident that they can restore that with OT.  On Tuesday he will be fitted, also at the Center for Discovery,  for new braces and splints -  a night leg brace and hand splint, and a day leg brace and hand splint.

The plan still is not to return to school until after the January break, and even then to only go for half day.  The focus for this time, and even once school starts, will be therapy

All in all, a good day!

Monday, November 27, 2017

Better today!

Byron had no fever for most of the day today.  This is great news.  I spoke to the surgeon who said we can just watch and see or start Byron on a low dose of steroids.  Apparently the fevers are caused by inflammation.  The inflammation will go down in time or can be sped along by the steroids.   It looks like today was a good turning point so we will wait on the steroids.  Other than that Byron remains in great spirits.  He even made a new singing video ;)

Sunday, November 26, 2017

Temperature Regulator Error?

After a weekend of wildly fluctuating temperatures with no apparent end in sight, I'm wondering if Byron's system is having trouble regulating his internal temperature.  He does not appear sick, is as happy as ever and full of energy.  But the right lymph node is huge and hard, there is a slight ridge near the lower part of his incision and his temperature is all over the map  -  from normal to 101 to 99.3.  Tylenol seems to reduce it a bit but not enough.  I will call the surgeon on Monday just to check in. But I wonder if this is a temporary normal?

Friday, November 24, 2017

We've Got Your Back

I called Columbia today to discuss Byron's fevers.  I called a general number with no idea if anyone would call me back.  Within 45 minutes I had a call from a neurosurgeon, who said he would consult with Byron's neurosurgeon, who was doing surgery at that very moment, the day after Thanksgiving.  When I thanked him profusely for calling me back so quickly and being so readily available he said to me "We've got your back."  Phew - what a good thing!

Byron's fevers are all over the place today, 101, 99.5 and the up again.  The doctor said to start a Tylenol regimen and see how he does through the weekend.  They do not want to restart the steroids (thank God) and think it might resolve on it's own.  The key is that Byron seems fine, happy and healthy, just a bit hot.  His incision is amazingly flat and healed, he is not swollen too much, and the only thing that is a bit huge, is the lymph behind his ear.  But it's not sore.  So it's a mystery.

But now that I know that these big guns at Columbia have my back, and Grace is always present, I am much more relaxed tonight.  We'll get through this.

Fevers Fluctuating

Byron's fever is back up again - 99.4.  I have no idea why of course.  Just watching.  The number to watch on his discharge papers from the hospital is 101.  It hasn't risen up that high yet - fingers crossed.  Taking his temperature way too often :)

The Night Shift

Kudos to all Moms who get up in the middle of the night for feedings.  I forget the slam of fatigue one gets from the night shift.  But ALL IS WELL this morning.  Fever is back down and he seems better.  It was worth it.  Just five more nights 😝