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.  

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.

SQUEEEZE!

Subways are loud - but fun!

Aaaaaah - relaxing before bed.

On our way to NYC!

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!

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 www.airbnb.com. 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!

Byron - The Imac Series

Byron enjoys using his little imac to play on the Elmo website and a few toddler computer games I installed for him. Recently he seems to have discovered the photobooth application and has taken pictures of himself in just about every style!

Easter 2010

Byron had a great Easter.  At the end of a full day we took a long walk.   We walked from our house down a steep incline with steps, for 1/2 mile.  At the end of the trail is a great playground.  We played there for about 30 minutes and then climbed all the way back up to our house.  Byron walked every step of the way by himself, except for the steepest part on our return trip.   He just turned three on March 28th and we are so proud of him for completing this favorite walk, way earlier than we ever thought he would.  Go Byron! Here's a slide show - (hint - just below the youtube logo, make sure 720p is selected (not 360) otherwise the quality is terrible. You can also click on the the little icon that looks like four arrows facing outwards and watch in full screen - enjoy!)

Elmo LIVE

It's a right passage to see your first live show.  Today was it for Byron.  He saw Elmo LIVE with is friend Eli.  Byron did pretty well although the lights and loud sounds were too much for him so we sat in the lobby for part of it.  The best was Byron's reaction when Elmo first came on stage.  Tears poured down his face out of sheer excitement and love for his buddy Elmo.  I could tell because he was beaming and crying at the same time - a true groupie!

Children and the Moon

Today was Byron's friend Eli's second birthday party. (that's ELi hugging Byron above) They spent a few hours this afternoon at their favorite jumping place at the mall.

After the party we had a long walk back to the car in the bitter cold.  The wind chill this afternoon was -5.  When the boys got into the backseat they were both shivering.  All of a sudden Eli saw the rising moon.  Eli loves the moon even more than Byron.  Eli shouted "Moon!" and then shivered, "cold".  Byron saw the moon - "Moon!" he shouted and then like Eli  said "cold".  Back and forth they said "MOON!" and then in small voices "cold"   "MOON!"  "cold" "MOON!" "cold".    All the way home the moon peeked out from behind trees and buildings and they would find it with great delight and shout "MOON!"  (by this time the car was warm so "cold" had dropped out. )

I asked Eli's mom if he had always loved the moon and she said he absolutely LOVES the moon.  In the summer he would watch it from his crib as he was falling asleep.  Byron loves the moon too, loves the book "Goodnight Moon" and will always point the moon out to us, long before we have noticed it ourselves.

Why do children love the moon?    Maybe because they love magic, they love things that glow and the moon is both.  It's light is soft and inviting, gentler than the sun, and more tender than the stars.  It seems to move, disappear and reappear, it seems to wink and even smile.   Or perhaps it's more mystical than that.  The moon has power, power even to pull on the tides.  The crescent moon itself is worn by Lord Shiva, and He is sometimes called Chandreshwara, the Lord of the Moon.  And in meditation we can see the effulgent inner moon light, subtle and soft or blazing bright.  Perhaps children, who are so in touch with the mystical, can sense this moon power.

Byron sleeps each night to the mantra "Om Namah Shivaya", a hymn to the inner Lord Shiva, as it plays quietly under that soft, gentle, wonderful moon.

Tonight's Moon:

Moon, so round and yellow,


Looking from on high,


How I love to see you


Shining in the sky.



Oft and oft I wonder,


When I see you there,


How they get to light you,


Hanging in the air;



Where you go at morning,


When the night is past,


And the sun comes peeping


O'er the hills at last.



Sometimes

I will watch you


Slyly overhead,


When you think I'm sleeping


Snugly in my bed. - Author Unknown

All is Well!

Byron's Botox shots went so well!  He only cried a little bit and was so cooperative and gentle.  As the doctor was leaving after administering the shots, Byron said with a big smile "Thank you Doctor!"  Byron's doctor was very touched.

The botox will take effect in 3 - 5 days and there should be a noticeable relaxation in the arm.

I'm sure what Byron really remembers of the day was the ride in the carousel, the trip to the toy store and the Ice Cream!  All in all a great day.

Byron Gets Botox Today

When I first heard Byron's doctor recommend that he have botox injections. my reaction was "HUH??!"  It was explained to me that the spasticity in the muscles of his left arm was inhibiting the freedom of movement in his hand and was possibly interfering with the bone growth as well.   The doctor's note said "When injected directly into a spastic tight muscle, the Botox is absorbed into the nerve, which stops sending signals to the muscle near the injection site."  It lasts about 6-9 months, and if it works, they will do it again.

Byron's arm will be spread with anesthetic cream an hour before the procedure thus deadening some of the pain.  Unlike cosmetic botox, these shots will be painful.  Ugh!

We will be joined on the trip to Syracuse by our neighbor and friend Heather and her two year old son Eli.  Eli and Byron are really sweet friends.  After the shots we will go to the mall for a ride on the Carousel.

First Day of School - So Far So Good!

Bob and I took Byron to school this morning.  He seemed very excited.  When we got there he went right to the toys to play.  His teacher, a wonderful woman named Liz, gave him special attention and played with him one on one.  I stayed in the background to watch but it became apparent that he was not interested in whether I was there or not so I snuck out - yeah!   At daycare he wouldn't let me leave and there was always some crying but not here.  So far so good!

Byron Starts Pre-School!

Tomorrow Byron begins his life as a student. He's 2 years and 9 months and he will be starting at the local elementary school pre-school program.  The class has 7 special needs kids and 7 typical kids.

Tonight I revisited two videos we made when milestones seemed far away and the future was so uncertain.  The first one has received over 1,600 views and the second almost a thousand.  Many people with CP and those who love them wrote in to comment.    I think I've shared them here before but here they are again!






Good luck tomorrow Byron - 
we are cheering for you!