Sunday, November 20, 2016

A Good Climb!

With all the brouhaha around the seizure developments, it's easy to lose sight of little challenges successfully overcome.  Yesterday, on an unseasonably warm November day, Byron tried again to climb this rock wall in our backyard that has been vexing him since he was three years old.  Over the years I would let him give up before he got to the top  - but not today.  Today we worked on it until he got it.  Go Byron!

Thursday, November 17, 2016

No Seizures but Lots of Spiking

The results of Byron's recent overnight EEG came back and it showed that he had spiking almost continuously while sleeping.  According to his neurologist these nighttime spikes need to be controlled otherwise they can affect his brain long term and his ability to learn.  So  - in addition to Tripletal she put him on Keppra.  Keppra is well know to have behavioral side effects - rages, irritability, tantrums and on and on.  And we had it ALL!

Byron was not himself on Keppra.  Homework was a nightmare.  I would read one sentence to him and he would have no idea what I read.  And that boy had attitude!  It was basically a nightmare.

So now we are weening off Keppra and I am seeking a second opinion from the Level four Epilepsy center at Columbia.  We are going to see Dr. Akman who is the chair of the Epilepsy department on December 20th.  Please wish us luck.  We need to find something to control the spiking without causing a melt down in behavior.

In the middle of it all we had a huge project for Byron due at school on the Iroquois Indians.  In my opinion this project was too huge for a special ed student in 4th grade but there you have it - what to do?  In the midst of all this Keppra-tude we got it done.  Here is Byron reading his very first essay with a custom made Longhouse  - made by Byron and his dad.  Pretty Awesome!

Saturday, October 22, 2016

Another At Home EEG

In June of 2015 Byron had his first seizure.  Since then he has only had one additional major seizure and two small ones.  He had a small seizure last week.

In the middle of the night, I heard Byron's voice calling my name in one of my dreams.  It was about 4:30 am.   I was quite certain that it had been just in a dream so I didn't check on him.  When I woke up later in the morning I said to Bob, "I wonder if Byron had a seizure, I heard him calling me."

About five minutes later, Byron ran out of his room and said "Mom I had a seizure last night!"  Apparently he was conscious but couldn't get up or speak.  I asked if he was calling out to me and he said "I was, but in my head."  I had heard him but only in my subconscious mind!   The only after effect of this seizure for Byron was a strong headache.

When Byron's neurologist learned of this recent episode she requested that he be checked again via EEG. Middletown, a town near us, has a great service that allows the patient to take the EEG and the video camera home with them.  It's quite portable.

Byron will sleep with all this on and then we will go back tomorrow morning to have it removed.  Modern technology is amazing!  The bond between mother and child is amazing!!

Wednesday, July 20, 2016

Cast Off!

Today we went to Dr. Hyman's office at Columbia to have the cast removed.  Byron was very excited.

This is a video of the cast removal - I guess it was pretty ticklish.

This is Byron's foot after the cast was removed with the surgical scars.  A bit more gory then I imagined.  Byron didn't mind though.  He thought it was cool.

This is a video of Byron walking immediately after the cast removal.  He looks pretty good!


Byron now has to wear a removable boot for two weeks until his foot brace, known as an AFO, is ready.  The boot looks like this:

So now a boy's summer can properly begin!  Swimming lessons on Saturdays and lots more pool time.

Also, Byron will start physical therapy three times per week at the Center for Discovery to regain strength and to ensure that his newly released heel stays down and his toe stays forward.  The journey continues!

Thursday, June 23, 2016


Remarkably, Byron has had almost no pain.  We left the hospital with codeine and valium but did not use either which is great.  Just a couple of doses if Ibuprofen when needed but that was it.

Today was the day I got him up and walking.  He was VERY resistant.  The fear of pain was actually the hardest part.  But he is getting now he is doing a great job.

Tuesday, June 21, 2016

Everything Went Smoothly!

Thank you everyone for all your kind words and blessings!  The surgery went amazingly well, without a hitch.  The doctor was very happy.

Byron threw up twice on the way home (in the cab) but we were well prepared with buckets and cloths.

Byron is eating now and said "all this is so relaxing!"

We go back in one month to get the cast off.  At that time he will be measured for a brace and a new cast will be put on for two weeks until the brace comes in and is fitted.  I hope that one will allow swimming!

Byron is well and home

All went well. The surgeon said the surgery went beautifully. Byron is very tired but ok.  More in a while.  

Byron is out but still asleep


And he's out. Good to sleep while we wait. 


Going to be about 2:00pm. 

Monday, June 20, 2016

Surgery Time

Byron's surgery is scheduled for some time around 1:00 pm tomorrow Tuesday.   He needs to check in at 11:00 am.  This means no food after midnight and no water or drinks after 9:00 am.   He is going to be an unhappy, hungry camper.  They explained to us that they have to take the babies first.  Must be a lot of babies

But today he is happy!  He doesn't seem nervous at all and informed us that after the surgery he is going to want Mountain Dew and Chips. These are two special treat only items.  And he said he will want to rest for awhile ;)  "Before"  foot photos at end.

Left Foot Before

Left foot on right  - notice minimal weight on it and heel up