Blog Overview


Byron Pratt, age 11, has Cerebral Palsy (Right Hemiplegia) caused by a stroke before birth. In 2015 he developed seizures and a rare form of Epilepsy called ESES, neither of which responded to treatment with medications. On November 3, 2017 he had a Functional Hemispherectomy. He has had many other major procedures in his short life including surgery for exotropia in both eyes, tonsils and adenoids removal, Selective Dorsal Rhizotomy (SDR), Constraint Therapy, and heel cord lengthening. The recent posts are about the Hemispherectomy and what follows. Older posts about other procedures can be found earlier in the blog or by links in the sidebar.

Monday, December 28, 2009

Byron Climbing!

When we were in Baltimore for Byron's therapy, one of the things I noticed was his insecurity and hesitancy around climbing equipment.  At our local mall, a new climbing, jumping play space just opened.


Tonight was our fourth visit.  It's five dollars an hour with an additional dollar for an extra hour.  Fantastic bargain!  The first time we visited, I had to enter each of the climbing spaces with Byron and help him on each piece of equipment.  The second and third times he got a bit better at each slide/jump. His dad was with us on the third visit and with Bob's encouragement he mastered a slide that he could not even get half way up the time before before.  Well tonight, on his own, he decided to climb the biggest, most scary slide in the whole place;  it's even hard for me.  Here he is!




Here's the much littler slide that he had trouble with the first couple of times.  He's great now!


Sledding!

We awoke to three inches of soft snow this morning.  Time for...SLEDDING!

Random Christmas 2009


Tuesday, December 22, 2009

Byron Skis!

Skiing is very important to Byron's Dad Bob.  Bob is a Ski Patroller at the local ski mountain, Greek Peak.  Since Byron was a little over 18 months, Bob has been piggy backing Byron down the slopes.  This year we began a systematic approach to teaching Byron to ski.  This is lesson one, on the Bunny Slope.  Greek Peak also has a Ski Wee program and an Adaptive Ski program for children with Special Needs.  As the winter progresses, we'll publish more ski updates!  In this video Byron is two years and eight months.






Sunday, December 20, 2009

The End of a Sweet Era and New Beginnings


These wonderful people above, Leslie, Kathy, Sheryl, Pam and Andy have been part of the community that has raised Byron since he was three months old.   Each one has made an indelible mark on Byron's life.  Byron can walk, talk and interact with others, in large part because of the loving and one -pointed attention of each of these talented professionals.

This week is the last week Byron will see this Team, "Team Byron" as I have photoshopped in above.   On January 4th he starts Elementary School with a new team, a new world, a new adventure.  The woman on the right in the picture below is Diane Olden.  She has coordinated all of Byron's care and looked after our family with so much care and love.  She has ben with us from the beginning and we owe her our sanity and our deep gratitude.  She is standing with Byron's new occupational therapist and his new speech therapist.  Last week we went to Byron's new classroom to take a tour and they came to meet us.   Byron's new teacher's name is Elizabeth Kuo and she seems very nice.   She will be coming to visit Byron's home too, so she can see what he likes to do and what his environment is like. I think that is so cool.

Circle time in Byron's new classroom.  Byron is sitting in the lap of his former Speech Therapist, Sheryl, who came for the school tour.  Byron was quite overwhelmed by the tour and he started rubbing his eyes and acting pretty sleepy.  Byron will be the youngest student in the whole school! Byron will be receiving Speech, Occupational Therapy, Physical Therapy and be meeting with a Social Worker - each for two times per week.  He will be a busy guy!





Byron has been hanging out at the new "Jumping Gym" at our local mall.  It's a large store full of blown up jumping stuff.  He loves it!



Byron and I have also been enjoying the company of our new neighbors Heather and her 22 month old son Eli.  Here they are having a snack at Eli's house.


Byron got his first Barber Shop haircut at his Dad's Barber the other day.  When I posted the picture below, I noticed that you could really see Byron's Exotropia (eye turning out).   Just a side note, Byron's eye doctor wants to put off surgery to correct this until Byron is four, with the idea that it may correct itself.  Bob and I want to get a second opinion on this, so Byron will be seeing a new eye doctor next week.  We'll see....

 

We put up our tree today.  Byron loves trains, so we found a train that will go around the tree!  It is sooo coool!  I think I love it more than Byron does.


Happy Holidays to everyone!!!!!

Sunday, November 29, 2009

New York Pictures

We had a lovely time in New York City visiting my brother Jeff and his new wife Patricia.   We intended to stay until Sunday but my already bad cough got much worse so we came home a bit early.  While we were there we visited FAO Schwartz, a local park on Bleeker Street where Byron had fun romping with another two year old and enjoyed a tasty Turkey Dinner at the home of Patricia's parents.  All in all a great time.

Saturday, November 14, 2009

Sweet Memories

There are moments, as a mother, that you want to capture and remember so that when your child is older and maybe not so full of love, you can look back and smile at the memory.

When I pick up Byron from daycare, as I walk into the classroom, I spend a minute or two just watching him play, before he sees me.  And then, either he'll look up or the teacher will say "Byron  - look who's here."  Every time, he looks up, and when he sees me his whole body tenses with emotion.  He smiles, but he also look like he's going to cry.  He pounds his little left fist into his right hand over and over clapping, and shouts "Hooray!! Mommy's home!"

And then he runs full tilt and wraps his whole body around my legs.  I just love it.

They Grow Up So Fast

A little anecdote.  Bob took Byron to the house next door that we manage while the owners are away.  Bob was fixing the closet.  All of a sudden Byron appears at our back door, which is quite a trek from the other house (through the yard, not the road!) and says he is looking for his own cup. I just watched to see what he was going to do.  He walked in to our kitchen, got himself an empty plastic cup from the counter, then let him self out the back door.  I watched as he climbed the hill back up to the neighbors house.  He's two and a half!!  Such an independent guy.

Friday, November 13, 2009

Byron's Big Test

The countdown to Byron' transition from Early Intervention to the School District begins.  Byron had a mandatory Psychological Evaluation today with a very nice woman named Leslie.  The results of this test will be paired with the recommendations of his current therapists to determine if Byron will still be classified as "Special Needs" and will continue to get services.  This is where many, if not most kids with Hemiplegia tend to excel.  Kids with Hemiplegia can do very well on cognitive tests, which are one of the main factors that determine whether a child can continue to receive services.

A word here about why services are important.  If Byron is declined for services he will no longer receive any Physical, Occupational or Speech therapy and will  be mainstreamed into school when he's five.  This means no special ed pre-school and all therapy will have to be private. Some parents choose to go this route, some for fear of the stigma in the school setting.  What I don't like about this is that there is no coordination of services and Byron would be left on his own in the classroom.  He would simply learn to compensate on his own.  He would manage but it's not ideal.

Byron aced the test.  "Normal" cognitive range is 80 to 115.  Byron got a 105.  At first in our discussion, as far as she was concerned, she could not recommend Byron for therapy in the school setting.  But then we began to talk about some of Byron's social challenges.  In Daycare he still does not interact fully with children. If they call his name or approach him he just stares blankly.  When I pick him up I always find him playing by himself.   I believe this has do to with a sense of over-stimulation that occurs in a room full of children.  He shuts down when there is too much noise and activity.  Also, when they hit him or take toys from him, which is normal possessive behavior at this age, he has little in the way of self-advocacy skills.  He shuts down further and isolates himself.  I watched this happen the other day on a slide.  A child pushed him out of the way to go down the slide first and Byron went down the slide and then left the room.

After hearing all this, the therapist said, on a social scale, Byron would rate a 29.   Typical for his age is 33.   (no idea what this scale means).  Finally she said based on this she would recommend placement - yeah!

Our final hurdle to Byron beginning pre-school on January 4th, is a meeting with all the therapists on December 2 along with the school administration.  I'm keeping my fingers crossed.  If he is admitted,  this will ensure at least 2-3 more years of therapy services as well as support from the administration to ensure that Byron is meeting his learning goals.  I feel this is so important for Byron.  By Kindergarten my strong sense is that he will be ready to embark on his school journey as any "typical" child.  I just think this little head start is all he needs.

Tuesday, October 27, 2009

Byron's ABCs and Therapy Videos

After breakfast this morning, Byron suddenly started singing through the ABCs without prompting.  It's a bit rough and garbled in parts but very cute.  They must be working on this at Daycare (yeah daycare!). Bob said he didn't know the ABC song until after he started Kindergarden (his Mom will have to verify that).  I tried to capture it on video several times and finally got it.  Here's one from the AM.  You will need to turn your volume way up to hear it.



I showed this video to Byron and he wanted to watch it over and over!
Here's one from dinner time:


Byron also had a great therapy session at home today with his Physical Therapist Kathy Schlough.  As most of his therapy is at daycare, I captured some of today's session on video to keep track of his progress.

Here's Byron putting together an airplane.

Drinking with two hands:


Attempting to pick up a small plastic shape.  The use of his left hand has regressed somewhat from the height of his constraint therapy progress as you can see here, but he's still a real trooper!

Sunday, October 25, 2009

10 pm Check

Byron at the foot of the bed but still IN the bed.  Flipped him over and put him up at the head of the bed where the rails are.  So far so good....

Toddler Bed Part One

The next phase in Byron's life has finally arrived - bye bye crib, hello big boy bed!  This is a developmental phase but also a necessity.  I leaned on his crib railing one too many times and it snapped in the middle.

Byron is two and a half.  The timing is right to convert the incredible three way convertible crib to it's next stage.  A couple of days ago we began to look for the stored old parts.  The problem was, we couldn't find the toddler side guards that came with the crib.  So we simply removed the broken side and voila - a toddler bed!



Off Byron went to his converted bed, completely nonplussed.  (Jeapordy theme music here) This is what I found the next morning at 7:00 am.


Bob and I asked him when he woke up if he had fallen out, and he told us that he had.  We think it's more likely that he just discovered that he could get out of the bed in the middle of the night, and then didn't bother to get back in.  Climbing is not his specialty after all, and this crib at it's lowest setting is pretty high off the ground.






HMM...  I got on Craig's list and found a listing for a nice toddler bed with side guards in Syracuse.  We went up this morning, got the bed, had a nice brunch, took a much needed side trip to Babies'r'us - home by 1 o'clock.  It's 8 o'clock pm now and so far so good.  Byron seems to like the new bed and can climb in and out of it easily.  I put him to bed at 7:00 and so far he hasn't opened the door and walked out so maybe we're on our way!