Seizure?!

50-60% percent of children with Hemiplegia develop seizures.  The seizures usually occur in the side of the Brain that had the stroke.

We always knew Byron was at risk for seizures.  When he was about 8 months old he was tested.  He participated in a three day video EEG in Syracuse . He was hooked up to monitors and had to stay in a crib for three days.  If I thought he was having a seizure I was asked to  push a big red button marked "Seizure " (aka panic) and they would mark that time on the video and the EEG.  In the three days we were there I pushed it once but it turned out it wasn't a seizure.  Just some excessive baby eye blinking.

Fast forward to today.  Byron will be eight years old on March 28.  Today at 1:00 his school called to tell me that Byron had a fever and a stomach ache and that I should come get him as soon as possible.

I brought him home and he immediately fell asleep on the couch. 

After a while he woke up and started staring.  I thought he was just resting so I ignored it.  After about twenty minutes I came back in and he was still staring.  I couldn't see his face because his blanket was covering his mouth.  Still I thought nothing of it. Another ten minutes and I checked on him again.  His eyes were open still.  I called his name, no response.  Now I was worried.  I ran over pulled the blanket off of him and saw that his eyes were locked to the left, his left arm was twitching and he was unresponsive.  He looked like he was having a full blown seizure.  And it must have been going on for over 30 minutes.

I called 911.  With Byron's history the local hospital suggested he be transferred via helicopter to Westchester Medical.  Bob and I were invited to drive there while Byron would be taken via the helicopter.  When we left Byron  was still unresponsive. This was almost 60 minutes now.

I know if someone is having a stroke, time is of the essence.  Was Byron having a stroke or a seizure or both?  No idea nor did they.  His locked eyes were concerning.

Bob and I drove to Westchester mostly in silence, except for my occasional sobs. I was experiencing a feeling I have never had in my life.  I have never really grieved per se, even in the face of the death of a parent or friend.  I think of death as a meaningful transition and God's will.  I have cried but not what I would call grieving; that heaving, aching wailing.  This was different. My feelings  were deep and visceral and a pain perhaps only a mother can feel.  I was a mess.  Whenever I spoke to anyone on the phone the intense pain and tears and grief would come again.

When we arrived at the hospital we saw our son's helicopter on the helipad.  Such a strange feeling, seeing the pilot, a stranger to us,  closing up the craft after carrying our precious personal cargo.

We knew Byron must be inside the hospital so we kept walking.  I readied myself for whatever we might find.  

What we found was an incredible joyous relief.  On the way to the hospital I asked everyone I talked to to pray, send good wishes, love, blessings.  My friends and family are really good at this.  THANK YOU! And all of their good wishes bore great fruit. As always, Grace abounds. 

Byron was awake!  Conscious, breathing, grouchy and really happy to see us.

Almost immediately after we arrived he fell asleep.

Now it was on to tests to see what caused all this - CAT scan

Lots of blood tests, doctors visits and on and on.  But boy was I happy to have Byron back.  It turns out Byron tested positive for Flu so that may be a factor as well.

Our friend Elizabeth came and brought some comfort food.  We found a hotel for Bob and I am doing the first night shift.  Tomorrow an EEG, more tests and a consult with an expert Pediatric Neurologist.  

By Midnight they said they would have a room for us.  I'm writing this while sitting on a spare gurney.  

Before Byron fell asleep he had this face.  

Back to his charming self.  What a day!!

On November 24,2014 Byron went to his first Radio City Music Hall Show - the Winter spectacular.

Denise was sick so Shami went with Byron and Dad.

Byron liked the A train.  Here he is with Shami.

The show had lots of fun charactors

As always the march of the wooden soldiers.

After the show a quick stop at the FDNY fire department store for a picture

After the show we went to Rockefeller Center and watched the skaters.

Byron likes the street musicians.  He always gives them a dollar.

Byron Sings Let it Go

It amazes me how much children love this song. Most adults I know really don't like it at all!  Byron loves it, has memorized it and has pretty good pitch!  Check it out....

First Day of Second Grade!

Harbor Lights Cruise

Byron loves New York City, and so do we!  Tonight we took the Harbor Lights cruise on the circle line with Bob's Sister and Brother-in-law Karen and Chris.  The weather was beautiful and the visuals were stunning!

Byron's Teeny Water Slide

Swimming!

For two years now I have wondered if Byron would ever gain the confidence to swim unaided in a pool.  This year, on a trip to Captiva Island, he met a 9 year old boy named Matthew who was an excellent swimmer.  Matthew was very patient with Byron's inability to swim and played with him in the shallow waters happily.  One day Matthew was unavailable to play and Byron surprised us all by not only jumping into the shallow end unaided, but the deep end as well.  He even swam across the pool! Byron was so proud to show Matthew what he had learned later that day.  I am certain that the SDR surgery also made it possible for Byron to more freely move his leg.  In the video you can see some nice movement there. Go Byron!  (and thank you Matthew!!)

First good sunset!

Byron's Crazy Captiva Go Pro Video - Wait for the Dad Splash!

Fun in the sun!

Captiva Island Bench 2009 and 2014

Before and After - Stairs

I have very few before and after videos. Here is a new video of Byron walking down stairs - no braces.  Now look at the video below.  That was with full bracing shortly after the surgery - his toe was pointed WAYYYY in.  Great to see good progress!

Byron First Dorsal Rhizotomy Follow Up - Columbia

Today Byron had his 6 months follow up to the SDR surgery.  It was the first time we have seen his surgery and recovery team since November 2013.  The appointment was at Columbia Presbyterian at the Spasticity Clinic.

The comparison of the before with the after testing was very promising.  His spasticity numbers had decreased which was very good.  What was most surprising was their reaction to Byron himself.  One therapist said "He seems like a totally different kid!"

Byron was cooperative, friendly and relaxed.  This was in stark contrast to several of his earlier visits with this team.  Each time he visits there he is asked to walk, run, jump and they play a lot with his legs and arms.  This time he really seemed to enjoy it.

The BEST news is that he no longer has to wear a leg brace.  They could see no difference between the SMOs, the AFO and nothing at all.  Needless to say this is awesome!

Byron is walking better but he still has a long way to go.  His ankle is still really tight so they showed me two excellent stretches I can do before he goes to bed.  Byron seemed to tolerate the stretch so I look forward to trying it.

Another piece of good news is no PERC surgery, which is the heal cord lengthening, is needed.  Phew!

Everyone, including me, is now focusing on his arm.  It seems his arm has little to no spasticity, no change since the surgery.  And no more Botox needed which is great.  We stayed for a while today to have a custom hand splint made.  It should arrive in about three weeks.

It is always so wonderful to work with experts in the field.  I hope we can work with this team more often.  There is a fairly good constraint therapy camp in New Jersey, so who knows, maybe this blog will go back to it original title - A Constraint Therapy Journal!

Byron is so Tall!!

Byron is 51 inches!

Happy Holidays!!!

The best Christmas present ever - Byron is home !!  We are so happy to have our family reunited and everyone happy, healthy and strong.  Thank you to all who have sent your blessings to Byron and our family and read this blog.  We LOVE you!!!!!

Last therapy sessions

Therapy has been so amazingly helpful here.  Their therapy village is really high tech.  Here is a short video of byron on a machine that helps him shift his weight correctly.  Mom & Dad will miss these daily therapies.  Byron has progressed so far.

Teachers Pet

This is Byron's teacher.  Her name is Jen.  She is always so happy to see Byron each day.  Wednesday was her birthday and Byron gave her stickers.  She was overjoyed!  Then we sang happy birthday.  Byron really likes school here.  He is doing so well.

New Dressing Speed Record

This morning Bryon was challenged by his OT (Sheri) to dress is less than 10 minutes!  Could it be possible?   - YES !!!

He dressed himself in 5 minutes with only a tiny bit of help starting his sox.

Bye Maureen

Byron had his last PT session with Maureen.  She is taking off today and Friday to use up her vacation for the year.  She was so sweet in her goodbye.  She will coordinate with his therapists at school and at the center for discovery.  Byron really liked her as was doing everything she asked during therapy.   Thank you Maureen!

Byron will be a little sad to leave

Today at lunch Bryon said that he likes school here a little bit. (great praise!).  He also likes having recreation with all the other kids.  He has become friends with most of the kids on the floor.  They circle like sharks while waiting for req.  It is great fun every day.

Here is therapy

Byron is doing great at therapy.  Today was an obstacle course.  And stairs. He is doing very well.

So Happy He's Coming Home!

Just finished my "shift" at Blythedale. I can't wait until the family is all together again!

Byron had therapy in a very complicated computer device today. He said he didn't like it but secretly I know he did.  You shift your weight to get a little cake to stay in a box on a computer screen.  Then the computer tells the therapist what Byron needs to work on to improve his balance and weight distribution.  Very cool!

The wheelchair is "normal"

Tonight I was speaking with some parents about their son Moshe, who had the same surgery Byron had but is still not allowed by the hospital to use anything but a wheel chair.

I saw him walk the other day and he walks quite well, but he still has far to go.  Moshe's mom told me that he walked and ran before the surgery, but just on his toes.  I said to her that it must be so hard for Moshe to be confined to a wheel chair here, but that I had noticed that he seems perfectly ok with it.  Then she said something interesting.  She said that here in Blythedale, everyone is in a wheelchair, so it's the normal way to be.

When Byron goes to recreation, he stays in his wheelchair the entire time, even though he's perfectly free to walk.  At Blythedale you stay in a wheelchair if you wan to fit in, to be "normal".

What a strange and wonderful thing that is.

Dr. Anderson, Byron's Surgeon

This is a video from the Columbia/New York Presbyterian hospital website of the neurosurgeon who performed Byron's Selective Dorsal Rhizotomy.  What I found amazing about him was that just after Byron's eight hour surgery, Dr. Anderson had another major surgery.  Then at 11:30 that night he stopped by to see us.  He was just as friendly and upbeat and fresh as he was at 7:30 that morning.  This man obviously really loves what he does and he's good at it!

Release date set

Post by Bob:

Byron is doing really well in therapy.  They were initially thinking about coming home on December 20 now it looks like the doctors and therapists have agreed on a release date of December 13.  Good Job Byron!

Here he is hard at work on his iPad and on his stander.

p.s. the wheel chair races are still on!  Byron is taking on all challangers.

oops - strawberry shortcake girls helping to walk

Post by Bob:

Yesterday I mistakenly gave credit to the Power Puff girls when in fact it was the strawberry shortcake girls that are helping Byron walk better.  Here is the difference in the two splints and a video of Byron walking.  - enjoy

Walking better - Powder Puff Girls to the rescue

Post by Bob:

Today the physical therapist tried a new leg brace on Byron's left leg.  It was much like the brace he has now but is not split to flex at the ankle.  His walking was amazing!  He liked it - it was pink and had pictures of the powder puff girls on it.  Sorry no picture.  Maybe tomorrow.