Next Steps....

Byron is very happy to be home.  Unfortunately he is not looking forward to school starting.  The days are quite long, he leaves at 8:30 and doesn't get home until 4:30.  If /when the surgery happens he will not go back to school for some time, and when he does it will likely only be for a few hours a day.  I'm sure he will be happy about that, yet it will be a challenging year learning wise.

The school is great and they are making provisions to make him as comfortable as possible.  They are covering all the fluorescent lights in his classroom with scarves and they are letting him sit on a sensory chair which is basically a ball chair.  We are all hoping that the the homework is not too much this year.  After such a long day, he can have nearly an hour of homework each day.  Byron is very disciplined about getting his homework done right away, but he often does not have the brainpower to focus enough to complete it accurately.  So it's a struggle.

As far as next steps with the surgery, it is a waiting game.  We have an appointment on the 21st of September for an all day neuro-psych evaluation.   This will let us know if he has had any intellectual regression since the last test in December of 2016.  The approvals for the MEG test are moving along.  When these tests are done we travel to Tarrytown to meet with his doctor.   She has to petition a large board of surgeons and others before the surgery can/will be scheduled.  So we wait.  I'm guessing it will be October/November.  It would be nice if it would be before winter so traveling will be easier.

The surgery would be at Columbia Presbyterian in New York and then rehab at Blythedale Childrens in Westchester.  Blythedale is a great place and he has been there before.  They have a school within the facility and lots of fun activities for the kids.  Even if kids are on a stretcher or in a wheelchair, everyone participates.  Some children are there for 6 months or longer, but Byron is likely only to be there for about a month.

Byron is spending his time before school playing his beloved video games, visiting with family and friends and making videos for his you tube channel - Byron Gamer Plus.  I just posted this video last night for him and given everything he is going through it is such an inspiration.  He chose this song and it seems very appropriate.

Going home!

We are leaving as soon as they can disconnect him from the electrodes. Next step is the test in New Jersey and a follow up with the doctor in September.  Dr. Ackman is also going to meet with the surgical team to get their next steps. The Onfi appears to be a good stop gap until next steps can be determined.   It will be nice to be home!

Working?

The Onfi seems to be working a little bit.  He's down from 33 episodes to about 20 overnight.  But it can take a couple of days for the full dosage to kick in.  We may be discharged today after all.  We'll know in a couple of hours.

The VEEG tech showed me the seizures on the video recording yesterday afternoon.  They don't look like seizures at all to me but once you see them over and over in a repetitive fashion it makes sense.  First he starts chewing, then he grinds his teeth, then he stretches both legs out very straight and then he wipes he nose with his right hand.  That's it.  I am amazed how many times, while he is sleeping, I have seen him do this and never thought anything of it.  But when he does the exact same thing 30 times you can begin to see it as a pattern.    These are what they call "clinical" seizures meaning that there are outward movements.  The "subclinical" spiking is still there unfortunately and that hasn't decreased.  It is still at 80-85% of the night.

So we are marching towards the surgery with these new meds as a precaution until we get there.

Oculus

There is a saying I remember from the Sound of Music - When God closes a door, he always opens a window.  An Oculus is a round window and this afternoon we discovered one  - Oculus Rift!

We got a new roommate this afternoon and there was more crying and SCREAMING as the electrodes were put on so I made the wild and crazy decision to disconnect Byron from the monitors and go for a walk.  As much for my sanity as his.

We rode the elevator for a while and then went to the lobby.  There we stumbled upon an entire video game arcade set up for the kids.  Byron has been wanting to try virtual realty and they had two VR headsets on the Oculus Rift system.  Byron had SO much fun.  His mood is better and so is mine.

Managing the Unimaginable

Byron's doctor just left.  According to the EEG Byron had 33 seizures last night.  (Long pause)

So now we try and add Onfi to his seizure medicines today and we could see a good result tonight.   Byron is already begging to leave so this will be hard for him.  It's possible we may be here a day or two longer.

And we are now looking at the Functional Hemispherectomy surgery again.  I'm not sure if the Onfi works if they go forward with that full on or not, I guess we have to wait and see.

The doctor has also ordered a test that we have to have at Overlook Hospital in New Jersey which will tell us where his visual field cut is.  This is important because the surgery will give him a field cut if he does not already have one.  This means that the left side of his vision in both eyes will be gone after the surgery.  

Poor Poor B.  Sad for him today.

Spiking at 85%

We met with the doctor yesterday morning and the spiking is back to 85%.  Byron had some activity that looked like outward seizures in the middle of the night but they are not sure.  We should see the doctor this morning in a couple of hours and I am going to ask her some pointed questions to see if we can get some clear options on how to move forward.  This is such an inexact science it seems!

Yesterday Byron had a light strobe test to see if they could induce a seizure.  He had to stare at flashing light off and on for five minutes.  No seizures from that source were found.

We also had a nice visit from Byron's brother Ryan and his wife Regina.  Byron and Ryan played Minecraft and Regina snuggled with Byron while I took a much needed walk down to the river.  The air was hot but the breeze was lovely!  More later today...

Back in the Hospital

In March of 2017, Byron's ESES, an extremely rare form of Epilepsy that occurs during sleep, went into remission.  He went from spiking while sleeping 85% of the time down to 11%, and to almost none during the day.  In July, during his next routine EEG, his doctor informed us that the spiking was now up to 95% which is very serious.  Turns out that small dose of valium (5 mg), that seemed to be the answer, has stopped working.

So here we are again, this time on Eclipse day, back at Morgan Stanley Children's in New York.   Because we had really good eclipse glasses, we had doctors, nurses and patients coming to our room to view the eclipse.

Byron is a trooper.  We are sharing a room this time, and the young fellow next to us is crying SO LOUD and screaming while he is getting the electrodes put on.  Byron is so used to it that he just relaxes and goes with it.   Byron's doctor is on the floor for the whole week so we should get some good results in the morning.  We will be here until Thursday and hopefully we will have enough good information to make decisions about next steps.  I will outline what those next steps might be tomorrow.

Summertime!

It's amazing it's already August!  Byron had a great summer.

Byron with Sister-In-Law Regina at the Lake

Byron attended overnight camp at Frost Valley in mid July and he just finished their two week day camp.  He was not crazy about the overnight camp (He missed his Mom)  😌😀 but he really liked the day camp.  8 straight hours of no electronics of any kind!!

Drumming in Overnight Camp

Japanese Robes in Friendship Lodge

Byron loved to ride to day camp in different ways.  He especially liked to ride to the bus stop on the back of his dad's scooter:

The bus picked him up at Benjamin Coser elementary school and took him on the 30 minute journey to the camp.

Next post - Health Update