All Better Now

We finally got settled in to the section of the room by the windows.  Byron is asleep and all is well.  The view overlooks the front entrance and some dolphin topiary.  Like the last time we were here we have a corner room so it's extra large.  I do hope they honor our need for quiet and healing by letting us stay here by ourselves for a while. We'll see!

With Mantra Bear he calls Kevins

Rough Night

Our first night at Blythedale was not so smooth.  Our roommate had a lot of trouble overnight so there was not much sleep to be had.  I immediately brought this up with the nurse practitioner this morning, and now that the roommate has left, they are going to see if they can block this room off as a private room.  This would be awesome!!

Byron also has a fever this morning and some swelling around the incision so they are not going to push him off to school or therapy today.  As we didn't sleep much last night this could be the cause but of course I have no idea.

I sent pictures of the scar off to Dr. Feldstein, the surgeon, this morning, but he replied that there is no cause for worry. 😥  The oiliness is bacetration they are putting on twice a day to prevent infection.

At Blythedale

It's been a whirlwind day!  At 11:00 am we learned that we would be leaving the hospital for Blythedale at 12:30.  We checked out of our Airbnb and I got on the ambulance with Byron and Bob got on the bus for Loch Sheldrake.  Only one parent at a time can stay at Blythedale so we will start longer shifts as of today.

Byron was so warmly welcomed at Blythedale by Maureen, the physical therapist, who remembered him fondly from his last time here.  Byron was examined, poked and prodded by every conceivable type of therapist, neurologist, nurse, teacher, social worker and on and on.  We are both exhausted but happy. We know we are in a good safe space to spend the next little while.


Byron is in a shared room, but luckily the fellow who has the part of the room with the window is leaving tomorrow so we will move to that side of the room.

The part of the room we will move into tomorrow

Byron will have a bit of school in the morning and then therapy in the afternoons.  He was not cleared to walk the halls on his own so he will move from place to place in a wheel chair for now.

Settling In

Out of ICU

We are out of ICU and on the regular floor.  This is a floor Byron has spent a lot of time on in the last few years so there are many familiar faces.  It looks like we will be at Blythedale Rehab in a day or two, with the MRI happening tomorrow.  Here is a picture Bob took after he sponge washed Byron's head.

Byron Walking with the PT

Byron's walking is really good!  We are very happy about this.

Many Open Questions Today

Today there are many changes/activities that will/may happen.

1) Byron could move from ICU to a regular floor.  He's doing so well however that the surgeon said that our "Miracle Man" (his words) could go straight to Blythedale rehab today.  It is unlikely they can get the paper work ready for such a transfer so it maybe that we will stay here in ICU another night. Everything is up in the air at this point.
2) Byron should have a sedated MRI some time today or even overnight.  It's a 24 hour MRI here I guess.  And the regular slots during the day are always full.  The MRI will show the surgeon if there are any connections left although today he told us that will be very hard to see.  When they disconnect the right hemisphere from the left they want to make sure there are no nerve or blood vessel connections still intact.   These micro connections can still allow some of the seizure activity to move across and bother the "good" hemisphere.
3) Byron will get his hair washed today.  Then they will just put a bit of Neosporin on the scar twice a day.  I'm very happy for the hair wash because then we will look a bit more like himself.
4) Byron still remains very grouchy due to the surgery but also because of the steroids he is getting.  But they are going to wean those today.  It is very funny because he is so grouchy and ornery but he always says please and thank you.  So that's something :)

Sunday - Part Three

Surprise!

Sunday - Part Two

The physical therapist came and got Byron to stand and sit up in a chair.   His face is still swollen on the right side but everyone is saying it is so much less than any other patient they have seen with similar surgery .  The nurse this morning was quite shocked at how good he looked!

Byron has been complaining about how hard it is to chew.  We learned just today (not sure why they didn't tell us this before) that they had to cut the muscle in his right jaw, so chewing may be difficult for three or four weeks.  We will ask the hospital to keep the food as soft as possible.

It looks like they will not move him downstairs until tomorrow.  They want to get an MRI done before they move him.  The MRI will check to see that everything on the right side is disconnected.

Sunday- Part One

This morning they took the bandage off.  Everything looks great.  Everyone is amazed at how little swelling there is and last night he had no fever at all.  Today they will likely move him out of ICU to the regular floor.  This is the floor he has been on many times for EEG and other tests.

Saturday Part Four - Eventide

Byron is much better this evening.  His pain has abated considerably and he is now awake more. He's been awake since about 5 pm consistently.  He ate 1/2 of a milkshake and one chicken nugget  - yay!!

Just now he was remembering a picture he saw this evening of his brother's dog Penny and I saw him genuinely smile for the first time.  This is the picture he was remembering.

One of the things they told us to expect was a big fever.  But as Byron is breaking all the "rules",  he has only had a fever of 99.5 which is perfectly ok.

He is also able to push himself up in bed using both of his legs.  I am confident that when they get him up tomorrow he will walk just fine - fingers crossed!

Saturday Part Three - Pain

We had been warned in articles we had read and accounts from other families that had gone through Hemispherectomy, that at some point there would be pain - and a lot of it.

The pain began around one.  They weaned him off the morphine because they want him to move today.  They gave him his first dose of Oxycontin soon after but it didn't help.  It was painful for me to watch.  He kept begging for them to give him back his "button" which I know gave him great relief every time he pushed it.

BTW - I would not recommend a surgery on a Friday, as the weekend is kind of sluggish in the ICU.  It took them a very long time and much insistence on my part to get the additional pain medicine. Finally, after about 45 minutes, they brought him some more Oxy.

After about 5 minutes this extra dose kicked in and he was able to fall asleep.  During that horrible forty five minutes I was able to make him feel better by getting into bed with him and putting my hand on the skin of his back and sending him healing thoughts.  Up until this point he hasn't wanted me to stand too near the bed or put any hands on him.

He's peacefully sleeping now.  He hasn't really eaten anything yet except a tiny bit of pancake.  Chewing hurts. But he is drinking and he passed gas, which apparently is a very big deal and a good sign. 😝

When Byron woke up we chatted a bit and I put some on video.  I would only make a video with Byron's consent, and Byron is usually pretty eager to make videos.   The lights are quite low but as you can see in the video, he is really speaking and moving well.

Saturday Part Two

Since I arrived this morning Byron has mostly been sleeping.  He wakes up for a minute or so and then goes back to sleep.  I am sure that sleep is very good for healing but I am also guessing that this is the first time in a very long time that Byron's sleep has not been interrupted by the spiking and seizures that plagued him for so long.  He seems so at peace.

Saturday Part One

Byron seems very good today. He's tired but alert. He's very grouchy but always says please and thank you :)

He is drinking on his own.  He chewed a tiny bit of chocolate chip pancake.  He said that chewing hurts which is to be expected.

They are weaning him off of morphine.  Since last night he had a little button that only he was allowed to use.  He could push it whenever he felt pain and then it had a lock out for ten minutes.   The parents are not allowed to push it by law which I think is pretty cool.  They are transitioning him to just tylenol in a few hours.

His eyes are sensitive to light so we have the blinds drawn and the lights off.  But he says his vision is ok.  I noticed he is tilting his head to the left to watch the iPad screen and I'll pay more attention to his eyes as he is feeling better.  But he very strongly said that his vision is not bothering him as of yet.  This is more great news!

All of the blessings and prayers from around the world are still gracing us every second.  Your love is very palpable.  Thank you again SO much!

Bob just sent a video

I love that Byron seems more alert!!

Surgeon Follow Up

The surgeon came by to see Byron in the ICU (Intensive Care Unit) about two hours after the surgery.  I told him that Byron was speaking in full sentences and could move his left leg and arm, and smile.  He said , "Certainly not on cue, just involuntarily right?'  I said, "No, we asked him to move them and he could."  The surgeon was very surprised by this.  He said "Well don't be surprised if he loses that agin in a day or two, but if it comes on this early there is a very high likelihood that it will come back."  He also let us know that Byron is on a very high dose of steroids to reduce swelling.  He told us that he will be VERY cranky in the coming few days.  Byron has been a bit cranky but hey - he's just had brain surgery.  I would likely be cranky too!

The epilepsy doctor also came in and she was very pleased at how alert and present Byron was.

Bob is staying there tonight and I'll go back up in the morning.  It's been a long but very WONDERFUL day!

Byron is Doing so Awesome!!

I have read so many accounts of children who have had this surgery who are not able to talk or move for a really long time.  Byron is talking and moving both his left arm and leg which is amazing!!  He is also already being generally himself personality wise.  He just asked for a pillow.  He is speaking in full sentences e.g. asking us to pull his socks up. He has asked what time it is.   I can not stress enough how extraordinary this is.  I'll post more as he is less groggy.  I also made a video which is below.

He’s awake and talking!!!!

That’s very unusual. We haven’t seen him yet.

It’s Over!

Heading up to ICU.  Should be able to see him soon.  :)))

Major part of surgery is done!

They are just closing now and we should be able to see him in about an hour. Everything went smoothly and easefully.  Depending on how long he takes to come out of anesthesia they will remove the breathing tube before we see him. I would prefer that!!

No real updates yet

The patient advocate called in to the surgery to see how things are going.  The surgeon said things are going fine but has no idea how long it will be.  So we wait.

We are Feeling All the Blessings!!

Thank you so much for ALL the

Byron was great going in

At about 7:30 am, Bob went in to the surgery theater with Byron.  They put Byron on a warm air bed as the room was very cold.  He was relaxed and asking everyone whether they were going to put him to sleep now.  He had a case of the hiccups at this point.  As soon as the anesthesia mask went on his face, the hiccups increased.  He said "It's not working!" A second later he was asleep.  We should get an update from the surgery by phone soon.

Byron Has Gone In

5:30 am Subway

Bob suited up to go in for the anesthesia

Byron and the Surgeon Dr. Feldstein

ZZZ

Everyone (except me) is asleep.  5:00 am wake up on the phone alarms.  We will take the 1 train subway from 137th and Broadway (Byron loves the subway) to the 168th street stop at 5:45/6:00 am.

We are resting peacefully tonight knowing that we are held aloft by the blessings of so many.  We feel all the love and blessings deeply, and what could have been a very stressful evening, is turning into a calm and hopeful night.   Blessed night to all!

Surgery scheduled for 7:30am

We just heard that the surgery is scheduled for 7:30 am with an arrival time of 6:15.  Regular medicines and food until midnight and nothing after that.

Dinner Happiness - at OSO on Amsterdam and 141st

Settling In

We just arrived in NYC to our lovely Airbnb in Harlem.  We will stay here through next week. We were greeted with pastries and drinks and a parking space across the street. Magic!  We will learn around 4 o’clock when the arrival time is for the surgery, but a quick call to the surgeon’s  office preliminarliy indicated that we arrive at 6:00 am for surgery at 7:00.

Bob is sleepy

Byron likes it here!

Insurance Approved!

After a few hiccups with Byron's Insurance - Fidelis Managed Care Medicaid - we are approved!  This means the surgery, the hospital, the surgeons and rehab are all going to be paid at 100%.   We did learn from the surgeon's office that if the out of network doctor (who is one of the surgeons) was not approved, the doctor would perform the surgery for free.  :)

We leave on Thursday afternoon and have rented an Airbnb on 140th street and Amsterdam until next Wednesday.  After that we have some flexibility to rent for longer if need be.

Onwards!

We REALLY have a date!

Apparently all went well when Byron was presented to the surgical team yesterday.  Byron has a a surgical date of November 3 at 7:30 am.

Here he is - his usual wacky and wild self!

We Have a Date?

The surgeons office called with a tentative surgery date - Friday November 3, 2017.  But nothing is real until Byron's case is presented tomorrow at 9:30 am.  We will all stay tuned!

More info on today's meeting

During the meeting today, the surgeon gave us more details on the surgery, recovery, time in the hospital, etc.

Byron can expect to be in surgery for 6-8 hours.  The surgery is done with a microscope.  Byron will have a four inch hole that will be closed up with very tiny screws that the doctor showed to us.  With these screws, Byron will still be able to go through an MRI, C scan, metal detectors etc.  The bone will heal completely in three months.

Byron will be in ICU for  1-3 days and then in the hospital for another 3-10.  Because we are looking to go to Blythedale in Westchester for rehab, he may be transferred there early as they can do most of the wound care etc.

The most common immediate side effect is a kind of placid demeanor with not much personality.  This is due to the brain trying to reorient itself.  And the doctor said that Byron could just wake up completely the same as he went in.  This would be due to the fact that there is currently not much going on in the right side.  The MEG test results showed there was no activity there at all when Byron read or moved his eyes or spoke, other than seizure activity, so that is a very good sign.  And all the seizure activity is still originating from the right so that is very good.

The surgeon promised they would call us today with a date but that didn't happen.  I will call them tomorrow to see what can be done about getting a date.  The surgeon said that we can start with a date even before he is presented because even if they choose the VNS instead of the surgery, it would be the same team.  What we didn't make completely clear is that if the team is only willing to do the VNS, we will go to NYU for another opinion.  As the team is not the ones seeing the regression as we do, we can't possibly wait the 8-10 months that the VNS will take to work.  And as the surgeon said, we may end up here again in a year with a VNS failure.   The thing that makes me nervous is he strongly recommended the surgery last year when Byron was presented but the neurologists convinced everyone that we needed to try more drugs first.  So they do have some sway.  Ah well - another two more days of waiting!

Below are some pictures he showed us of Byron's MRI. The white space that can be seen in the right hemisphere is fluid.  According to the MRI , the left hemisphere is completely normal and seems to be doing all the good work.

No date...yet

We arrived at the surgeons and he immediately told us Byron’s case had not been presented yet and would be on Thursday. He told us they were considering two options, functional hemispherectomy and the implantation of a Vagus Nerve Stimulator. I FREAKED out (a bit).  The VNS has a low success rate and is rarely used in kids with as much brain damage as Byron. Midway through my speech Bob had to interrupt me and say rather forcefully, “Denise, he is agreeing with you!”  Deep breath. Deep deep breath.  

Bob and Dr. Feldstein really connected. They both make pens with a lathe and they compared their handiwork with photos and samples.

By the end of the visit we agreed that they would call us soon with a surgery date. The surgery would likely be early November and would likely be the Functional Hemispherectomy. So again, we wait.   More soon. On the bus home now.

Appointments

Byron's appointment with the surgeon Dr. Feldstein will be on Tuesday, the day after Byron's case is presented to the surgical board.  We should learn a lot in that appointment on Tuesday.

I confess I am a bit nervous.  What I am hoping for is that Byron is approved for the Functional Hemispherectomy on Monday and the appointment on Tuesday is to discuss logistics, outcomes, and to make a plan.  What I do not want to happen is that they either postpone again for some other intervention that is likely not to work, or suggest a much lesser surgery.  The reason why I do not want the latter is that from everything I have read, including the scholarly articles I can get my hands on, is that these "Lobectomies" or partial surgeries have a very low cure rate and the Hemispheretcomy ends up needing to be done down the road anyway.  They may err on the side of caution with this due to their fear that Byron will lose some critical functionality, but that caution may be specific to this hospital. The Cleveland Clinic, one of the top places to have this surgery in the world, weighed in on Byron's case last year.  The Dr. there said they would not hesitate to go immediately to the Functional Hemispherectomy and that this was the best course of action. We can't choose this hospital however, because Byron's insurance is limited to New York based hospitals.

So we are very much hoping that from here on in we have smooth sailing towards the cure that will give Byron the best possible life - seizure free!

Things are moving!!

Just heard from Dr. Akman's nurse that Byron's case is being presented to the surgical committee next Monday ( a required step before the surgery can be approved) and we are going to meet with the surgeon, Dr. Feldstein this week.  When Byron's case was presented in January 2017 they determined that we needed to try more pharmaceutical interventions first, before surgery was considered.  I asked if that was likely to happen this time and the nurse said, "Dr. Akman is very clear that surgery is the next step for Byron."

It is very strange to be excited about a surgery of this magnitude, but with everything that is happening right now (Byron forgot the word for "Banana" the other day) it is the best next step.

Ultimately the board did approve the surgery in March 2017, but Byron went into temporary remission so we postponed the surgery.  In March, Byron's condition was not nearly as dire.  So I might have always wondered "Did I do the right thing?"  But now we are absolutely sure.  No regrets - only looking forward.

Random Thoughts and Hurry Up!

It seems very weird to be wanting a surgery to come soon but in this case, we do!  Byron's teacher let us know that he can no longer be in school without an aid.  He is being disrespectful, disruptive and in her words "He is not learning anything, He is not retaining anything."  This is classic ESES regression.

For so long we didn't see regression with Byron's ESES, but now that he is also having clinical seizures at night as well, his poor overworked brain can no longer handle it.  

We have introduced CBD oil into his daily medication regime, which seems to be helping a bit with attention.  We are using Charlotte's Web, Advanced Formula.  We give him 1ml in the AM and 1.5 ml in the PM.  Each .6 ml has 50 mg Hemp oil.  Each dose is about 90 minutes from his other medications. 

This CBD oil costs about $250 per bottle, not covered by insurance, but at this point it's worth it.  Speaking of medication costs, if we didn't have insurance, the new medication he is on -  Onfi - is $1,375 per month.  

Byron is on Medicaid due to the extent of his disability and it is because we live in New York State that it pays for most everything.  

My iPad created this little musical slide show for me this morning.  It reminds me of what a sweet boy he is!

New Seizures and Waiting

Last Monday Byron had the MEG test which is a combination of an EEG and and MRI.  He did pretty well but one of the objectives was that he sleep in the machine for an hour.  In order to make this happen I was required to keep him up until 2:00 am the night before.  This was the night that Hurricane Irma hit the coast of Florida so there was lots to keep us up but Byron started to fade out completely by 12:00 am.  So off we went to McDonalds in his footy pajamas.  The young man behind the counter asked us if we were going on a road trip and we just smiled and said no.  We brought the food home and watched "Captain Underpants" until 1:30 which was all Byron could take.  

The next morning Bob woke Byron up at 6 and took him to the test. But he didn't sleep!  Sheesh!   Even so, we do think they got most of what they needed.  We won't know the results until the end of September. 

On Thursday of this week we go to New York for an updated Nuero Psych evaluation were they will see if there has been any intellectual regression since the seizures have gotten so much worse.  

I asked the doctor what the next steps are and she said they are waiting for the MEG results and then he will be represented to the surgical team.  In the mean time, Byron woke up completely disoriented yesterday.  He obviously had a bad night with seizures.  He could not even dress himself.  I chose to send him to school anyway because he seems to be getting better, but he was sent home again at noon.  He is much better today.   I put a call in to the doctor but haven't heard anything yet as of this morning.  

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

Surgery Postponed!

We have very good news -  at least for now.   Byron had two more critical tests to complete on Monday and Tuesday even though the surgery was already scheduled for Feb 8.  

Surprisingly, the new EEG Byron had overnight on Monday night was excellent. The sub-clinical spiking that predicated the need for the surgery is nearly gone.  It went from him spiking every ten seconds during the day down to 1% and down from 85% to 11% at night.    So the small dose of Valium he is on, 5mg before bed, is really working.  

The second test was to determine if he has a field cut i.e. because of his stroke on the right side, the left side of each eye is vey likely not seeing.  It turns out, rather miraculously, he does not have any field cut.  The surgery he was about to have would absolutely give him this field cut.  So the surgeons are now hesitant to do this type of radical hemispherectomy surgery.

The recommendation is now to wait and see, retest in June and go from there.  We are very happy with this outcome.  He will still need an aid in school because of the actual seizures which have not abated, but the dangerous stuff, the subclinical spiking, seems to be responding well to the new medication.  

Prayers and blessings really really do work.  Never doubt it.

A Surgery Date and A Song

We received the news that Byron's Functional Hemispherectomy surgery will be on Wednesday, February 8th at 8am at Morgan Stanley Children's Hospital in New York.  It will go for most of the day.  DEEEP breath...

And then this

Byron told me that he had a song stuck in his head today.  He wanted to see the lyrics and for me to help him understand what they meant.  I looked it up and was amazed to see that it summarized this unimaginable thing.  For this little boy (and his family)

"Something Wild"

by Lindsey Stirling

                                                        

You had your maps drawn
You had other plans
To hang your hopes on
Every road they led you down felt so wrong
So you found another way

You've got a big heart
The way you see the world
It got you this far
You might have some bruises
And a few of scars
But you know you're gonna be okay

Even though you're scared
You're stronger than you know

If you're lost out where the lights are blinding
Caught in all, the stars are hiding
That's when something wild calls you home, home
If you face the fear that keeps you frozen
Chase the sky into the ocean
That's when something wild calls you home, home

Sometimes the past can
Make the ground beneath you feel like a quicksand
You don't have to worry
You reach for my hand
And I know you're gonna be okay
You're gonna be okay

Even though you're scared
You're stronger than you know

If you're lost out where the lights are blinding
Caught in all, the stars are hiding
That's when something wild calls you home, home
If you face the fear that keeps you frozen
Chase the sky into the ocean
That's when something wild calls you home, home

Calls you home
Calls you home
Calls you home
Calls you home

If you're lost out where the lights are blinding
Caught in all, the stars are hiding
That's when something wild calls you home...

If you're lost out where the lights are blinding
Caught in all, the stars are hiding
That's when something wild calls you home, home
If you face the fear that keeps you frozen
Chase the sky into the ocean
That's when something wild calls you home, home