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.

On our way to NYC!

Friday, November 15, 2013

The time for the surgery

A very nice nurse from the hospital just called to let us know about the times for Monday.

Byron, Bob and I will arrive at Morgan Stanley Children's Hospital, aka New York Presbyterian, at 6:15 am and the surgery is at 7:30 am.  No food or liquids after midnight.

The really good news is that we can be there when they anesthetize him and they won't put the IV needle in until he's asleep.  What a relief!

Thursday, November 14, 2013

Byron's 1st grade School Photo - Age 6
On Monday, November 18, 2013 Byron will have a Selective Dorsal Rhizotomy (SDR). Of the many thousands of these procedures done since the 1950s, less than one percent are preformed on children with Hemiplegia. In the last five years, top neurosurgeons who perform this surgery have determined that it has enough significant impact on children with only one side weakness, to make the risks worth the positive outcome.

 The following is from the SDR website associated with the St. Louis children’s hospital:

 “Two groups of nerve roots leave the spinal cord and lie in the spinal canal. The ventral spinal roots send information to the muscle; the dorsal spinal roots transmit sensation from the muscle to the spinal cord. At the time of the operation, the neurosurgeon divides each of the dorsal roots into 3-5 rootlets and stimulates each rootlet electrically. By examining electromyographic (EMG) responses from muscles in the lower extremities, the surgical team identifies the rootlets that cause spasticity. The abnormal rootlets are selectively cut, leaving the normal rootlets intact. This reduces messages from the muscle, resulting in a better balance of activities of nerve cells in the spinal cord, and thus reduces spasticity. ”

While in New York, we’ll be staying at a lovely apartment I found through It’s only 6 blocks from the hospital so it will be easy to go there and rest.

Dr. Richard Anderson from New York Presbyterian will be performing the surgery. Byron will be in surgery for 4-5 hours on Monday, and then in ICU most of the rest of that day.

 On Wednesday, November 20 he will move by Ambulette to Blythesdale Childrens in Valhalla, NY. This is a gorgeous private acute rehabilitation facility just for kids. All the children spend most of their day in therapy and the rest of the time in school that happens right on campus. Children attend classes on stretchers, in wheel chairs, however they are most comfortable. They try to make the children as comfortable as possible by encouraging street clothes and normal activities. Byron will be there for 3 – 4 weeks. He will be relearning how to use his left leg once the spasticity is gone. They have a pool and many other useful therapy tools. Bob will be there with him staying in the facility for the duration. I will try to update every day with pictures and videos.

 Lots of Love!


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 ...