Saturday, December 14, 2013

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!!!!!

Friday, December 13, 2013

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.

Thursday, December 12, 2013

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!

Wednesday, December 11, 2013

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.

Tuesday, December 10, 2013

Here is therapy

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

Monday, December 9, 2013

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!

Saturday, December 7, 2013

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!

Friday, December 6, 2013

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.

Wednesday, December 4, 2013

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

Tuesday, December 3, 2013

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.

Oreo's and friends

Yesterday a couple of Byron's best friends came to visit.  Swami Apoorvananda (camera shy) and Shami had a lovely visit.  Byron was so excited to see them.   Byron had special request for Oreos.

Here is Byron enjoying them.

The Oreos were just as messy as they look - fun was had by all.

Sunday, December 1, 2013

Messiah is 7!

Tonight was a big night.  Byron's roommate and "best friend" turned seven and had a birthday bash.  He also goes home tommorrow.  I know Byron will miss him very much.

During the party, a nurse named Angelo brought in a portable Bose stereo system and we danced and danced to VERY loud dance tunes.  A little boy who has spent most of his time on his back, started to move his hands and legs to the music.  His parents were so happy.  It was a very fun night.

Progress is slow but sure

It's been a little more that a week since Byron arrived at Blythesdale Children's Hospital.  When he first began walking after the surgery his left toe was forward and straight.  As his brain remembers the old patterns, it's a continual struggle to keep his toe out.  When he walks very slowly and concentrates, the left toe stays straightish.

When he runs his toe is TOTALLY turned in, much worse than before.  This is to be expected I guess as the spasticity is no longer holding it in one place and it's wiggly and shifting.  It's a bit disheartening I must confess!

Saturday, November 30, 2013

My Brother is here

Post by Bob:

Friday no School time for recreation.  Byron likes to play Wii games with Messiah and was surprised when his brother Ryan and Regina came to visit.  He loves his big brother.

Kayle came over to visit and use the I pad.  She doesn't speak but visits sometimes.

Thursday, November 28, 2013

Kids - Gone - Wild

Post by Bob:

After a day of eating and excessive iPad playing Byron decided that they (Messiah) and he should go for a wheelchair expedition around the halls.  Lots of laughter and squealing ensued.

The next thing you know kids were rolling out of their rooms and the hall was full.  A good time was had by all the children.  The nurses are chasing them as I write this.  It is time to prep for bed.


Post by Bob

Thanksgiving is a sleepy day at Blythedale Children's Hospital.  The therapists get to spend time with their families.  Denise came today and Byron was very happy to see her.   We had a special holiday lunch today.  It was nice. Happy thanksgiving everyone!

Wednesday, November 27, 2013

Standing Therapy

Post by Bob:

Byron has standing therapy each day now at 3:30.  While standing he won three games of candy land.     He has a tray in front of him and can play games.   It looks medieval and he is all strapped in but he does not mind it - it forces him to put equal weight on each leg.

Have a look-

Keeping up with school

Post by Bob:

Byron goes to school from 9:00 am to 3:00 pm.  When he has therapy they pull him out of class and take him back when therapy is done.  His teacher's name is Jen and she is "High Energy"  - the kids all seem to like her.

When she first greeted Byron she gave him an energetic "Good Morning!!" and then introduced him to the class.  Here is a picture of Jen and Byron's classroom.

Tuesday, November 26, 2013

Messiah gets a haircut

Post by Bob:

A big day for Messiah his Dad and his great grand aunt came to visit.  His Dad gave him a haircut.

Here he is - very handsome!

Therapy Village

Post by Bob:

A good time at therapy today.  They are making a standard time for bike therapy at 1:15 each day.  He likes the bike a lot - at 3:30 he has "standing" therapy.  It looks like a dungeon device.  I did not get a good picture of that - Maybe tomorrow.

Here is a picture of the therapy village.  Each of the little houses are therapy stations. it's really great!

Party Next Door

post by Bob:

Last night we went to bed a little later.  There was a fun party next door and Byron really liked the music.  Here is a little sample.  They sang a song with all the kids names and danced.  - and gave out candy.

Monday, November 25, 2013

Therapy on the treadmill

Post by Bob:
Byron ended his school day with a therapy session with Maurine.  He liked the treadmill.
He was tired at the end.

Meet Messiah

Post by Bob:
This is Byron's new best hospital friend - His name is Messiah and he is Byron's roommate

Hi I like the iPad - a LOT!

Byron's little corner of the world

Posted by Bob:
Here is Byron's room.  He is welcoming visitors.

A silly video

Many people have asked - "How is Byron?" and what I believe they really want to know is how is he emotionally.  How is he taking all of this?  As you can see in this video Byron is back to his silly wonderful self, here trying to imitate the singing Christmas dog.  He is in no pain and he is very happy at Blythesdale.  Put simply - he's great!!

Sunday, November 24, 2013

First night with out Momma

Posted by Bob:
Weekends are a bit slow - no therapy, no school.  But they do have Recreation.  Tonights movie is "Partly cloudy with a chance of meatballs".  Byron loves playing with his roomate Messiah.  They are big friends and play with iPads and go to Rec together.  We were told to take our time grocery shopping, so that they could play by themselves. Byron feels very safe with the nurses station just outside the door.

Denise left this afternoon and Byron called her on FaceTime the moment she got home.  This may be the first time they have been apart since he was born.  He loves his Momma.

We are learning more about the Hasidic community too.  Next door are two hasidic families who are very friendly.  The hospital has made a number of changes to accommodate their kosher needs and the fact that they cannot drive on the Sabbath.  They put beds in the therapy room to accomodate them.  They are really very funny and sing on Friday nights.  

Saturday, November 23, 2013

Quiet Saturday

Things are quiet here on the weekends - no therapy or class.  Byron and I took a little walk to get some sun.  When I saw how well Byron was walking I got very excited and took a video.

What I was impressed with was that Byron was starting to lead with his heel on the left foot.

When Byron saw the video he said "send it Mrs. Scheirer!" (Byron's 1st grade teacher)  So this one's for you Mrs. S!

Friday, November 22, 2013

Adaptive Bike

Look at those two hands and strong legs!

First Day of School

This is Byron's room.  His day starts at 8:00 am with breakfast. School begins at 9:00am.  They have a full school right down the hall with grades pre-k - 12 in little classrooms, about 4-5 children per class.

Most of the day he is pulled out for therapy.  They have this therapy area called "the village" with state of the art therapy equipment.  It's a huge room with tiny actual houses inside.  Inside each house is a therapy modality.  

Byron is starting to turn his toe in again. The PT explained that this is his old movement pattern coming back out of habit.  This is why it is so critical that he is here getting this kind of intense work.

His arm is indeed more relaxed.  It will be interesting to see what happens there.

Byron came back to the room for lunch at 11:30 and then he goes back to school from 12:15-3:00.

Byron has a roommate.  His name is Messiah.  (interesting choice for a name!).  He's here most of the time alone and he's just 6.  That makes me a bit sad.  He's in a wheelchair and has trouble with movement and speech.  He's very sweet.    He LOVES Byrons' iPad.  I think the sharing may become a challenge but hopefully not.

Bob and I will have time to go out to lunch today. It will be nice to have a break.

Thursday, November 21, 2013

Blythesdale is lovely

Blythesdale is a place of hope and healing. Byron's floor has 20-30 tiny kids all in wheel chairs learning to walk.  It's an amazing place. Byron is the only ambulatory child on the floor.

Tomorrow he will start school. 9-3 with lots of therapy.

When we left the hospital in NYC this morning, Byron's surgeon said that in all his years of SDR he has never had a child walk on the third day. He added, "We really hit a home run!"

On to Blythedale

Bob will add posts in the coming days. Bob wrote this one.
Today Byron transitioned to Blythedale children's hospital.  Byron liked the ambulance ride.  He got to ride is a stretcher and went by ambulance.  The ride was fun.  Here is Byron going to the ambulance.

Tuesday, November 19, 2013

End of Day Three

Byron is doing really great physically.  The wound looks great, no temperature, his pain is being managed with Tylenol and Tordol (a very strong ibuprofen type medicine).

We moved to a QUIET room on the 6th floor.  It's not private but it's so much better.  No beeping, no alarms, just rest.

Tomorrow is the big day.  The therapists will come and get him out of bed and see how he moves.  We are very excited for that and will take videos.  The plan is still to go up to Blythesdale Children's Hospital tomorrow late afternoon. If not, then on Thursday.   The insurance company has to give the go ahead before we can go.


Here's a video of Byron walking to the hospital at 5:45 am on Monday.  So far this is the only "before"  we have of his walking.  The doctor took a really thorough one which I will see if we can get.

Byron's left foot turns in and the heel is mostly up. Over the next month we'll be looking for improvement in these areas and more.

Byron is progressing well... 10:00 am Tuesday

Byron slept through the night and has been able to hold down his breakfast, which was delicious apple crepes - yumm!

They took the 2 IV lines out of his right arm and removed the stabilizing board, which means he can use his right hand again.  He was so relieved.  There is still an IV line in his left hand.

They removed the catheter line yesterday.   He hadn't been able to pee on his own since the surgery.  They were concerned about this but last night at 1am and again this morning he did just fine with the bed urinal.

So most of the worrying things are past us now - eating, peeing, sleeping , moving.  He is still confined to his back with only his head lifted.  Tomorrow they may want to see if he can walk a bit.

I'm not sure if we will leave here tomorrow or Thursday.  The  next step is to move us to a room with doors, windows and walls.  The loud beeping of monitors in intensive care is incessant, and the constant urgency of critically ill children is jarring to the nerves and heart.

Byron is sleeping now...yeah!

Monday, November 18, 2013

Good Night!

He's Finally Asleep

Byron had a big rush of energy just after the surgery.  He ate, watched spongebob and then right around 6 he crashed.  His behavior started to get a bit odd and he vomited profusely.  They think he may be a bit allergic to the morphine.  So the right pain management will be a priority now.

Unfortunately they have moved him to pediatric intensive care which is a crazy place to be when recovering from surgery.  I hope we get a regular room tomorrow.

Once we got him settled here he finally fell asleep.  Fingers crossed that he sleeps through the night.  I will be staying with Byron tonight.  Fingers crossed that I can sleep through the night!

He's Awake and Watching Sponge Bob

He's doing so well.  Having ice chips and and an italian ice.

The Doctor said that they cut 67% of the sensory nerves which is very good.  They found LOTs of spasticity.  Byron's left leg is so loose.  It's incredible!  But he's moving it just fine.  I'm guessing his recovery will go very smoothly.  

Still in icu .  got to go  

Byron is out!

All is well. More soon. We are in icu. He's on Valium and morphine so he's sound asleep.

Almost done!

We just heard that Byron's surgery is nearly finished!  One more hour and he will be out - about 1:15pm.  The nurse said it is going very well.

Update 10:00 am

The nurse just told us that the prep is done and the actual surgery has just begun. 

Waiting now. Be done likely between 12-2.

We went into the operating room to be there for the anesthesia.  Byron struggled a bit - he didn't like the mask.  But he's asleep now and we are at breakfast.
Here's some cute photo's

At the hospital

The "happy juice" has been administered.  Byron is so loopy and happy. This is a little tranquilizer to help him relax. The actuall anesthesia in about 20 min. Surgery will start at 9ish.  

Sunday, November 17, 2013

Fun day in New York City

Today we had a fun day exploring New York city with Bob's son Ryan.   We are hoping to get an early night tonight.  We will leave the house about 6:00 am tomorrow and walk the 7 blocks to the Hospital.
Byron's loves the old elevator in the apartment building

Taking the Roosevelt Island Tram - Cool!
Bob, Ryan and Byron on the Tram

Light Show - Grand Central Terminal

Dinner at PJ O'Rourke - gotta fill up because no breakfast tomorrow.

Subways are loud - but fun!

Aaaaaah - relaxing before bed.


Sweet Byron, who has lately been a very healthy guy, will be having a heart procedure called an ablation on Tuesday August 24. In February ...