Sunday, November 30, 2014

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.

Friday, October 24, 2014

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....

Sunday, August 17, 2014

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!

Sunday, June 8, 2014


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!!)

Thursday, May 22, 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!


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 ...