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!


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 ...