Byron's Wonderful World

Byron - The Imac Series

2010-06-19T08:29:00.006-04:00

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

2010-04-04T20:45:00.017-04:00

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

2010-03-02T19:56:00.001-05:00

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

2010-01-28T21:50:00.009-05:00

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!

2010-01-25T19:56:00.000-05:00

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

2010-01-25T09:10:00.000-05:00

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!

2010-01-04T09:38:00.000-05:00

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!

2010-01-03T21:50:00.002-05:00

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!

Byron Climbing!

2009-12-28T21:33:00.003-05:00

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!

2009-12-28T20:58:00.003-05:00

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

Random Christmas 2009

2009-12-28T16:29:00.000-05:00

Byron Skis!

2009-12-22T22:30:00.006-05:00

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.

The End of a Sweet Era and New Beginnings

2009-12-20T20:19:00.002-05:00

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!!!!!

New York Pictures

2009-11-29T15:09:00.002-05:00

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.

Byron Outside in His Jammies (or not)

2009-11-20T20:17:00.002-05:00

Sweet Memories

2009-11-14T22:54:00.000-05:00

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

2009-11-14T12:23:00.001-05:00

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.

Byron's Big Test

2009-11-13T15:17:00.002-05:00

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.

Happy Halloween Video

2009-10-31T23:12:00.002-04:00

Byron's ABCs and Therapy Videos

2009-10-27T22:56:00.001-04:00

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!

10 pm Check

2009-10-25T22:45:00.002-04:00

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

2009-10-25T19:37:00.002-04:00

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!

What happened to our sweet boy?

2009-10-21T20:43:00.000-04:00

Byron is two and one half and the trying twos have begun. Three of Byron's four therapists have pulled me a side, independently, and said that Byron is really acting up; throwing things, hitting, not following directions. His teachers at daycare, who were MADLY in love with him week one, today didn't even greet him when he walked in. Byron sort of skulked off to the side and ignored everybody.

Byron is undergoing a lot of change right now. He has been an only child, the center of everyone's attention, had one on one focus from his therapists since he was three months old, and recently returned from Kennedy Krieger where he had three therapist's attention at once. He is used to being the Golden Boy, the one who draws the focus of a room. Now he is one of twelve, loud, rambunctious kids, all way more socialized than he is, vying for the attention of three overworked teachers. Poor guy!

When I arrived to pick him up today, he was madly flirting with one teacher, while the other kids were all listening to a story. She was buying it, flirting right back. I could see that he was back to his old tricks, with a new scheme, divide and conquer. And it was working. I asked his main teacher how his behavior was today and he said "Much better!" I'm keeping my fingers crossed, because if all goes well, by January he will be in school every day from 8-2. I strongly feel that this socialization is the next very best step for him. Even if he doesn't like it at first.

Silly Video

2009-10-18T22:26:00.001-04:00

Our good friend Chandika is very happy about her new iphone. She was using it today to try to capture some video of Byron. Pretty cute.

Turn up your volume and don't blink or you might miss this one: Pop Goes the Weasel.

In this one we see the beginnings of the future DJ JAM Byron:

Byron LOVES Daycare

2009-10-15T10:17:00.000-04:00

Here I am back at the blog again. I will try to post a couple of times a week. Byron simply loves his daycare. Coincidentally his teacher, who is a wonderful local musician, is also a practitioner of Siddha Yoga and regularly visited the Ashram. His wife has been involved since 1973. Byron seems to attract people from Siddha Yoga. His service coordinator, the woman who saved our life when Byron was first diagnosed by coordinating all his therapy and getting us some much needed family therapy, was also a frequent visitor to the ashram. Cool!

The big news is that Byron will most probably begin preschool on January 3rd. Yep - pre School with a capital "S" at the local elementary school. The class will have six special needs kids and 6 "typical" kids and will be from 8am - 2pm every day. The kids are allowed to rest after lunch so Byron shouldn't get to worn out. He will only be 2 years and 9 months old after all. He will be in this class right up until Kindergarden in 2012 and then will transition to Kindergarden at the same school. The school is only 1.5 miles form our house so I will drive him there every day. The reason why I say he will "most probably" start there is because he has to have a final approval meeting on December 2 to get all the ducks in a row. But everyone thinks it will go through just fine. It is unprecedented for the public school to have an opening in this very sought after class in January so we are very lucky - the head of the early childhood program in Ithaca said that it must be Byron's "Karma" - I think so!

Byron will also receive all his therapy appointments in this class, but with different therapists. We will be very sad to leave this wonderful group of therapists/friends that have guided Byron through his milestones with such love and tender care. But I'm sure his new therapists will also be wonderful and can't wait to meet them. His care will now be coordinated by the School District until Kindergarden and then I'm not sure what happens after that. More soon!

First Day of School!

2009-10-07T10:40:00.000-04:00

Well maybe not the first day of school, but I dropped Byron off at his first day of daycare, which is in a school. Here's a snapshot and some video of him entering.

When we got there we ran into the Stacey, one of the Mom's from our special needs group. Her daughter and son are there too. Byron's occupational therapist Pam was also there to greet him and show him around.

For his first day of school, Byron was wearing his new Woodstock shirt and skinny Lev'is provided by his hip New York City Uncle Jeff and Aunt-to-be Patricia.

It's Official - He's Improved

2009-10-06T20:43:00.001-04:00

Byron has been back in Ithaca for a few days now and has been visited by his speech therapist, occupational therapist and physical therapist. These wonderful people have worked with Byron since he was three months old. All of them thought he his hand and arm usage was much better. They also remarked at how much better his speech was. Sheryl, his speech therapist, said his articulation was better, as well as his spontaneous use of words. Kennedy Krieger is very interested in the spontaneous improvement of speech that can result from Constraint Therapy. My understanding is that the speech and tongue center is very near the arm and hand section of the brain. When the hand section is improved, the area around that in the brain can be improved also.

Other big news - Byron begins daycare tomorrow! He will be at the Franziska Racker Center three days a weak from 8:30 am - 4:30 pm. He will now have much of his therapy there. The Franziska Racker center is a large organization that has been serving people with disabilities for decades. Byron will be in a typical daycare setting without special needs support per se, but the facility has many people there to support if he needs it. Then on Thursday we have a meeting with the Ithaca School district to talk about Byron beginning official pre-school in January. It's all happening so fast!

Today, Bob's car needed some major work on the wheels and also needed two tires replaced. We decided to walk there to pick up the car. Believe it or not, there is a major commercial thoroughfare with Home Depot, Goodyear etc, at the foot of a beautiful state park walk. We haven't taken this walk in quite some time and the fall colors were beautiful.

Home Home Home

2009-10-01T22:19:00.000-04:00

A wonderful trip. Great to be home. More another day!

Again?!

2009-09-30T20:53:00.000-04:00

Earlier this month, Dr. Pidcock let us know that he recommends children repeat the Constraint Therapy Program every year if they can manage it. A week later, the program coordinator Lisa Trotta asked me if I wanted to sign Byron up again for another round. Kennedy Krieger has a very long waiting list, and she assured me that Byron would be given a place if we could let her know now. At the time I could NOT imagine doing this again. Financially it has been challenging, but also it’s hard to be away from home for so long, and many other reasons. Well today, Bob and I signed Byron up for fall 2011. I know, call us crazy, but Byron has received so much from the program. We also feel it will be great to give him this opportunity right before he starts Kindergarten.

I also took a tour of the Ronald McDonald House in Baltimore today. What a remarkable place! It would be available to us if we wanted to stay there in 2011. It is like a fancy hotel built perfectly for families and children. There is a huge play area with every kind of toy for every age, including tiny kid size computers full of games. There’s even a big TV with Wii. The area is surrounded by glass so from the computer room, the exercise room, or the TV room you can watch the kids. There’s a huge fenced in playground, every sleeping room has a private bath and flat screen TV with DVD. Breakfast and Dinner is provided and there is a free fridge with other food. Parking is also free and there is shuttle bus to Kennedy Krieger. All this for $15 dollars a night. Sign us up!

"I've lived a life thats full. I've traveled each and every highway"

2009-09-29T20:16:00.000-04:00

Ok - so I'm a drama queen. But as as I sat down to write, the words to "My Way" began, "and so, the end is near....."

Tonight I was thinking back over all the things that have happened this past five weeks or so, and how much actually was accomplished. It’s a great thing to step outside of the same old world, to a new place, a new routine. I think this visit built some new neural pathways for me as well.

In the past five weeks:

I got over my fear of the Beltway- speaking of highways.

I’ve spent great quality time with my husband. Without all the distractions of his woodshop, house projects and my endless budgeting and organizing, we actually spent some fabulous time together. I enjoyed his company so much and he was a great help with Byron. This trip would not have been possible without him. And we both owe a huge debt of gratitude to Bob’s boss Knut who made it possible for Bob to continue to work for Lockheed while supporting Byron’s constraint therapy here in Maryland.

After 18 years as a PC user, I researched computers and bought a Macbook, right here in Maryland. It’s been a cross between falling in love and learning a new language - exciting, frustrating, enthralling, exhilarating, depressing, challenging, adrenaline producing, and sleep depriving . It’s a fantastic computer and I think I really get it now. There are great video tutorials online and it’s been fun to just get in there and explore. I transferred all my info from my old PC and the Mac is my main computer now.

I explored the underworld of the hacked jail broken iphone. In the evening while Byron was asleep, Bob and I would jump down the rabbit hole, and devour the relevent blogs. I finally decided to do it and WOW – what a wonderful new world of tethering, taking videos, live video streaming, customizing themes and much more. Why Apple and AT&T are keeping all this functionality from the average user is really odd. ($$ I assume)

In mid August we both started dieting and exercising. While here in Maryland, I’ve exercised nearly every day and since the diet began have lost 16 pounds. While Byron is at KKI, I go to the local YMCA and do a combination of cardio, weights and stretching. I really want to keep up this routine when we get home.

I’ve met, spent time with, and shared stories with, a wonderful family, whose son also has Hemiplegia. The damage to the right side of the brain is much rarer with this condition and her son has the exact same condition, same side, and is almost the same age. Juliet and Tim opened their home to us, showed us around and generally made us feel so comfortable and at ease. I hope Byron and Brandon and our two families can continue to get to know each other. We’ve invited them to the great white north for ski season next year – see you on the slopes!

I’ve also connected with other great people. Got acquainted with a relative I didn’t know I had, Dr. Frank Pidcock, the founder of Byron’s program and my sister-in-laws brother. What a lovely, kind man. He says he remembers me as a child but I can’t reciprocate I’m afraid. He’s one of Baltimore’s most popular pediatric specialists and an expert on Byron’s condition.

I had dinner with a wonderful friend who happened to be in Baltimore for a medical conference. I spent some good times with Lindsay as she came and went, to and from all her various adventures. One night Lindsay treated me to popcorn and “Julie and Julia” while Bob babysat. I so rarely get to the movies these days – what a great movie and what a treat! And thank you so much again Lindsay for opening your home to us. For trusting us and our two year old with your lovely white furniture, and just generally being a great friend.

I think I’ve gotten to know, at least a little bit, this deep, mysterious, enigmatic, dangerous, thoughtful, exciting, beautiful, wistful, complicated city called Baltimore. I have driven so many of her streets, seen the most magnificent architecture, and the deepest decay. Baltimore’s people spend a lot of time on their porches and on her streets. They seem to be a bright people, and a hopeful people. I hope the economics of this great historic city sort themselves out so she can continue to be restored to all her glory. And may John’s Hopkins, one of the crown jewels of Baltimore, continue to perform some of the greatest medical miracles of our age.

And lastly, I started my first blog. It’s been fun ending each day reviewing the highlights, sorting the interesting from the mundane, and then eventually writing about both. I’ve learned a lot. It’s helped me to live in the present, and to not worry so much.

Thanks for listening and sharing this journey with all of us. Just two more days!!!

A Toy

2009-09-28T20:46:00.001-04:00

Tomorrow and Wednesday are the last two therapy days for Byron at Kennedy Krieger. Thursday will be an all day testing day. What a remarkable journey for this brave little two and a half year old!

Tonight he and I went to Toys-R-Us to pick out a toy to honor all the hard work he put into these five weeks. My theory was - I'd let him wander around the store and try things out for a while. Then we'd see where he spent the most time and we'd get that. He immediately glommed on to the most cheesy Yo Gabba Gabba retro boom box. He absolutely loved it. Oh brother, another loud tinny computer music toy - but if he wanted it - he deserved it. We put it in the cart. Just as we were leaving to check out, we passed the REAL music aisle. Byron saw this tiny, kid size, wooden, non electronic, piano. (Byron loves pianos.) He was in toddler love. He spent almost a half an hour messing around with the keys. He'd run away for a second, then turn around and run full steam back to the piano shouting "DAT"! (means that). "Ok - this is it" I thought, with a bit of relief. Cheesy damn thing though - after only moderate banging, two keys popped off rendering the upper half of the notes just dull thuds. Oh - well, it was a good idea. Just when I thought I would spend the next year (or week) with the YGG boom box, I spotted this little Casio keyboard that seem to have some of the functionality of the bigger ones, at less than half the price. The kind sales clerk got us some batteries to try it out. The piano sound was not bad. I put it next to the wooden keyboard and let Byron play both. Of course he dabbled with the on off switch for a while, enjoying how all the lights came and went, but finally he settled into playing the keys. The clerk asked how old he was and when I told him two and a half, he said "Two and a half?! I wish I had been that into music when I was his age. I would be really good by now." He must have been a musician. So I asked him which one he'd get and he assured me that the Casio keyboard was a waaaay better deal and Byron would probably have it for a few years - not so with the little wooden one.

So we got it. We'll see if Byron can get beyond all the switches and drum effects and settle into the simple sound of the keys. I hope so because there are very few things that get him to use his left hand spontaneously, and one of them is the piano.

Here's a picture of Byron "playing" piano with Kenny Werner a couple of months ago. Kenny is a very accomplished Jazz pianist and his wife Lorraine babysits for Byron from time to time.

Annapolis

2009-09-27T20:09:00.000-04:00

Today Juliet took us to visit Annapolis. Annapolis is gorgeous and kind of what you'd expect from a navy town. Beautiful historic buildings, boats, really unusual shops and lot of tall fit people dressed impeccably in white polyester. Even their shoes are white. (way past labor day mind you) I went into the local pizza place to get some quarters for the 30 minutes only or you will be towed except for Christmas (literally) meter. The two guys that waited on me were also really tall fit, clean shaven guys who looked like the guys in white on the street. The lady/girl who waited on me in the crab shack was tall and fit and could have been one of the guys out there in white too - guys being generic in this case. The guy who made the balloon Elmo was tall and fit - I kid you not. It's like everyone was auditioning for the role of white navy dude and hoping that by being in the rarified proximity it just might happen to them one day. Sort of like LA. AND I had the best (only) crab cake sandwich I have ever had - OMG!!

Two Year Old Boy Party

2009-09-27T19:47:00.002-04:00

Last evening Juliet (the woman with whom Byron and I are visiting this weekend) invited two couples over for a party. What made this party fun was that all the couples that stayed for dinner had two-year old-ish boys. This scenario made it possible for a bit of actual adult dinner conversation. Once tiny portions of Juliet's delicious Baltimore sour beef, baked apples and sweet potato pie were eaten/nibbled/thrown by the boys, they descended upon the living room to romp and nearly destroy. Amidst the cacophony, I found out the Aaron, husband to Andrea and dad to Eamon, is a Bioethicist at Johns Hopkins. He is a full member of the scientific teams that are researching stem cells. Instead of focusing on the medical aspects though, his focus is on the ethics. Whew – speaking of hot topics!

Balitmorians seem to be moderately more concerned in general with ethics than other places I have visited. I was listening to a local radio program while driving around the other day. The topic was the killing of a burglar by a John’s Hopkins student with a samurai sword. Instead of just having the usual psychologist, politician, lawyer, they also had an ethicist. He eventually asked the question “Is there any kind of property so worth protecting that its protection justifies murder?” Not a conversation you could have every day without your handy dandy ethicist.

Alas the night ended too soon because of two-year-old bedtimes, so I didn’t get through my entire basket of tough ethics questions. Can’t remember what they were now, but it’s was so great to talk about something other than Blues Clues (BTW, how did they transition from the old guy to the new guy without traumatizing the kids, not to mention the poor blue dog – Juliet and I really want to know!)

The Mall Walkers

2009-09-26T14:16:00.003-04:00

In big malls around the country, before they open, people descend on the quiet hallways to power walk. The children and their parents also come to take advantage of a quieter gentler play area. Juliet took Brandon, Byron and I early this morning so that Brandon and Byron could practice their climbing. As soon as the mall opens, the bigger kids descend and it's not very toddler with CP friendly. Brandon is an excellent climber while Byron is more hesitant. Juliet climbs right up on the equipment with him and is Brandon's best motivator and cheerleader.

Here's a very short video sweep.

Behind the One Way Glass

2009-09-25T20:46:00.000-04:00

Today I got a chance to watch twenty minutes of a session with Byron behind one way glass. I'm not sure I was supposed to take videos and photos, but I did. The video is VERY grainy but it shows Byron eating yogurt bites with his right hand and holding the bag with his left hand, holding a sippy cup with two hands and pushing a tub of toys with both hands.

The photos are a bit better. Here he is eating a tiny yogurt bite with his left hand. Then he is playing on small drum. The last two - holding a sippy cup with two hands and holding the yogurt bite bag.

This weekend Byron and I are visiting our friend Juliet while her husband Tim is out of town. Here is a picture of the little guy at the local playground near Juliet's house.

A Little Disappointed

2009-09-24T20:01:00.000-04:00

I spent a short time this morning speaking with Dr. Frank Pidcock , the founder and director of Byron’s Constraint Therapy Program. As you may remember, we were surprised to find out that he is my sister-in-law Cathy’s brother. After catching up on some family background I told him that I was a bit disappointed with the fact that as soon as the cast came off, Byron seemed to revert back to his pervious clenched fist, left hand unusable condition. Dr. Pidcock assured me that this is actually quite common. The children tend to do remarkable things while the cast is on, and then often seemingly revert back when it is off. But he reassured me that this often improves as the weeks and months go by post treatment. He said that we don’t actually “rewire” the brain in this short amount of time, but lab studies have shown, with rats etc., that certain neurotransmitters are affected by the repetition of the exercises; and over time this can be built on. Dr. Pidcock said the he spoke to a former patient’s father the other day who told him that the weekend after they got back home, they began to see the most improvement. So I am feely better. It’s an ongoing process!

I was given an “at-home-program” that included a menu of things to continue working on with Byron, and the things we must do every day are:

1) Have him pick up a sippy cup and drink using two hands. If this becomes easy, we can increase the weight by adding more liquid.

2) Have him push his left arm through his shirt sleeve when dressing.

3) Pick up balls and blocks using two hands.

They gave us the program this early so that we could try it now, and still be able to ask questions.

Tomorrow I have been invited to sit in on 30 minutes of Byron’s therapy. I hope I can take pictures!

Cast Off!!

2009-09-23T22:41:00.000-04:00

Today Byron's cast was removed. Here's a video of his therapist bringing him out from his therapy today.

His fingernails were sooo long!

Unfortunately, as soon as the cast was removed, the spasticity in his left arm and hand returned almost immediately. This tightness must be very uncomfortable; imagine clenching your arm and fist really tightly for most of the day. This spasticity makes it difficult for him to open his hand and work with it even if he wants to. The most important thing is that he no longer has aversion to the hand and has a willingness to at least try to use it. I hope we can build on this small victory in the coming days.

Zee Zee's Home!

2009-09-22T22:38:00.000-04:00

Byron calls Lindsay - Zee Zee - and he's very happy she's home. He tells whomever will listen that he "lives at Zee Zee's house." Zee Zee brought our dog Daisy back from the beach too and we are very happy that she's home as well.

Tomorrow is the big day - the cast comes off! Now we will have a two handed boy and all the possibilities that come along with that. Plus - Bob and I will be very happy to be rid of the big club (cast) that always comes perilously close to smashing our eyeglasses.

Haircut!

2009-09-21T22:20:00.013-04:00

Today we found a hair salon geared just for kids with toys, a tv and rides. Getting Byron's haircut has always been quite a drama - lots of tears - so we do it very infrequently. Today Byron cried when we LEFT the hair salon!

In more left hand progress news - this morning Byron picked up 12 round peg blocks, sometimes two at a time. Later he threw two coins in a fountain!

He's in the Home Stretch

2009-09-20T21:30:00.003-04:00

Wow - It's hard to believe that the end is almost here. Byron has only two more days in his cast. What a wonderful weekend! The weather was as perfect as it could be and we had a nice mix of parks, food, friends and shopping.

Here some video footage we took tonight: Byron's Home Stretch!

Great Falls Park, ummm, Virginia?

2009-09-19T21:51:00.005-04:00

So we arrived at Great Falls Park in Virginia at 2:00 on the dot to meet our friends Tim, Juliet and their fabulous son Brandon. We took a sweet walk in the park, seeing all the wonderful sights, all the while calling our friends to make sure they could find us.

As we described where we were, they said they new exactly where that was and they would walk towards us. We waited, and we waited. When they didn't show up, I began to think that MAYBE we were in the wrong spot. I called Juliet back and said, "Is it possible we are in the wrong park?" To which she replied innocently, "What state are you in?" "Um, Virginia," I said, certain we had followed her directions to the letter. "Oh, hmmm, we're in Maryland, on the other side of the Potomac, you could always swim!" Oh brother! I thought we had seen them on the other lookout point across the river! So 20 minutes later we crossed the Potomac, (properly on 495) met our friends, and had a great feast.

Children Have Strokes More Common Than Thought - ABC News

2009-09-18T22:08:00.010-04:00

Chidren Have Strokes More Common Than Thought - ABC News

Shared via AddThis

A new research study came out today that's hopefully bringing awareness about pediatric stroke. It even reached the mainstream news this evening. This media attention is so important because many children who have strokes are not diagnosed right away, missing crucial therapy time. Byron's stroke was diagnosed at three months and so therapy could begin immediately.

To see this you have to click on the link, not the header.

Oops

2009-09-18T20:58:00.002-04:00

Just found out that Byron's cast comes off on Wednesday.

TGIF!

2009-09-18T14:15:00.001-04:00

It's hard to believe that there are still two more weeks left in this program. Somehow I keep thinking we are on our last week. Byron's cast will come off on Tuesday and then he is still in Therapy until the following Wednesday. He has evaluations and retesting on Thursday the 1st of October and then we drive back to Ithaca.

Byron's favorite new thing to do is to flush the toilet with is left hand. (not that he's using the toilet but when other people do) . I'm amazed at how much strength and focus this must take and of course we encourage it because it is so good for him.

Here is a photo of the little boy that has the morning session. He would not stop moving long enough for me to get a good picture but it's ok just the same. His mother and aunt wait in those two blue chairs for most of the three hours. They live near where we are staying in the town of Rockland.

Byron and Me

2009-09-17T20:12:00.001-04:00

Bob is away on a business trip to California so it’s just Byron and I for the next two days. I will post more progress videos on the weekend. We are really in the home stretch now. On Tuesday of next week Byron gets his cast off. In many ways I can’t wait. Of course it will be easier once he can feed himself and play more fully with his toys. But also the two-hand combination is the most powerful tool Byron can have for school and other important activities. This is the part of the therapy I am most interested in - teaching Byron to use his left hand as his helper hand. Now that he is aware it exists and has some range of functional motion, I’m eager to see how he puts it to use.

Byron really likes the park that is within walking distance from Lindsay’s house. These pictures were taken there this afternoon.

Hmmm.

2009-09-17T14:58:00.002-04:00

Where Have All The People Gone...Long TIme Passing

2009-09-17T14:55:00.004-04:00

While Byron is having his therapy I often got to the local YMCA to work out in the gym. As I mentioned in an earlier post, the neighborhood I drive through to get to the YMCA is one of the most economically diverse places I have ever been to in my life. Baltimore is s a wonderful city with lots of development projects that are beautifying the city. The waterfront area and downtown business districts look like any thriving city. But where Kennedy Krieger is located actually reminds me of Belfast in the early 80s. You could drive through neighborhood after neighborhood where so many bombs had hit, that entire blocks were deserted. You could still see the curtains, the wallpaper and remnants of normal life through the broken windows. It’s exactly the same thing here. The buildings are perfectly intact, no graffiti, some still have curtains in the windows, yet there are no people in them It’s like everyone just vanished and short of anything else to do, the building were just boarded or bricked up. Here is the multi-million dollar complex I am sitting somewhere in now:

The following shots were taken just a block and a half away in the surrounding neighborhood. With few exceptions, these buildings are completely uninhabited.

This is the abandoned historic school I mentioned in the earlier post.

“Where have all the flowers gone…. Long time passing. When will they ever learn, when will they ever learn.” That song was going round and round my mind as I was driving through this neighborhood. Where have all the people gone? Why did they leave? Was it a quick or a slow exodus? I’m sure it’s a complicated answer but I will have to ask around because I really really want to know.

Tire Therapy

2009-09-16T18:52:00.002-04:00

Ok - so I soon may be accused of having the most boring blog on the web. Not much is happening right now in the progress category - but we did have a flat tire today! We will use any excuse to get a little stretching in. BTW - That's a clean tire.

How's He Doing?

2009-09-15T22:04:00.001-04:00

One of the things people ask us the most about Byron’s therapy is “How’s he doing – is he ok with the cast? Is he complaining a lot? Is he having tantrums?” This is the thing I was most worried about too. Yet for whatever reason, Byron seems totally fine with the cast. He has never once asked for it to come off, or complained, or behaved in any way other than his happy self. Perhaps it’s partly because now he has this great club on the end of his arm that effectively can whack anything or anyone and get quite a big reaction. Or perhaps it’s because a two year old lives most completely in the present. This cast thing is what is happening now and it’s ok. Or perhaps since so many people are really really encouraging him to use his left hand right now, maybe on some level he understands that it’s all good for him. For whatever reason this whole experience has been much easier on us as a family than I ever thought it would be. Byron’s doctors encourage kids with hemiplegia to do this every year. I’m not so sure about that. One very full day at a time.

The Swing

2009-09-14T19:25:00.001-04:00

Byron's favorite playground activity is the swing. In the past it has been very difficult to get him to hold on with his left hand, and rarely could he ever keep it on. Once his left hand comes off the chain, he has never been able to get it back on until today. It's a bit hard to see but- yeah!

The Neighborhood

2009-09-14T14:11:00.004-04:00

Seventy years ago, in 1939, my father graduated from the Johns Hopkins University Physics Department . The campus was on Charles Street, which is just a short drive from where I am sitting today. The Kennedy Krieger campus is a part of a huge, state of the art, multizillion dollar campus that includes the medical school and the John’s Hopkins Hospital. As I was driving around the neighborhood today I kept trying to see it through my fathers eyes back in 1939. Back then, Johns Hopkins was funded by B&O railroad stock. During the depression, when the stock market hit rock bottom, John’s Hopkins was in deep financial trouble. My father remembers John’s Hopkins laying off some of its finest European Physics professors due to budget cuts.

Today, in 2009, Johns Hopkins is clearly thriving, but most everything else in the neighborhood is in sad disrepair. A few blocks over is a proud, well preserved brick building that runs the entire city block . It has majestic columns and perfectly preserved scroll writing etched into the façade that declare it a school built from 1905 – 1906. The façade also proudly lists its original superintendent’s name and founders. The entire building is boarded up and almost every window broken. But the structure is gorgeous. And viewing it through my NYC eyes, I was surprised to see not a speck of graffiti on it. There is a surprising lack of graffiti anywhere in this neighborhood. There is another building, much like the Flatiron building in New York, that beautifully takes up a pie shaped city block – completely boarded up. What will become of these architectural treasures I wonder? These two fine buildings are just blocks form the campus I am sitting in now. My father must have seen these city blocks when these fine structures, and the tall empty row houses that surround them, were in their prime. It will be very interesting to see what the next 70 years bring. In the era of the intense health debate, it’s clear, at least in this neighborhood of Baltimore, that the medical institutions are just about the only thing really thriving.

Also - Happy Fifth Wedding Anniversary Bob! It's been amazing. You are our steady hand.

Shopping Therapy

2009-09-13T21:00:00.013-04:00

Byron’s homework for this weekend was to open and close drawers and doors. Hmmmm…what better to place to do that than Ikea! We don’t have any Ikeas in upstate New York so this was fun for Mom and Dad too. What we didn’t expect were all the play kiosks they have throughout the store. At each one, Byron reached up with no hesitation and played using his left hand. Here are a few pictures of the different stations as well as a video of him manipulating some small balls.

At the station in the first video, he played there using his left hand for more than a half an hour. I think he got his therapy in for today.

We also spent some time at the Apple store in Bethesda, another store that we don’t have in our little town. Here they had several computer stations set up at kid height. Again - no hesitation in pushing the mouse with his left hand.

Bethesda is a fabulous town with a lovely, friendly downtown full of great little restaurants and shops. The people were so friendly and it’s a bit hip too. All in all a great day. Back to “school” tomorrow!

B&O Railroad Museum

2009-09-12T21:43:00.003-04:00

Today we spent the afternoon at the B&O Railway museum in Baltimore with our new friends Tim, Juliet and their son Brandon. We learned that this was the first roundhouse in the U.S. and from it came the first mile of railway track ever laid (lain?) in this country. Baltimore is where U.S. rail travel began. We took a ride in a 1940s passenger car on that first mile of track. The B&O line was the 300 or so mile stretch between Baltimore and the Ohio River Valley in Virginia.

The museum had lots of buttons to push, which were just head height for Byron. Instead of using his left hand to push the buttons, he discovered that his nose was a much more effective pushing device. He left nose tracks all over the museum. Oh well – one step forward, two steps back I guess…

Of course this was my favorite car (the Theater one if you couldn't guess. If you said Caboose you're in trouble!):

The Future is Bright

2009-09-11T20:06:00.003-04:00

We are almost half way through the casting section of Byron’s program. He seems to have hit a critical juncture where some functional use of the hand is really beginning to emerge. Tonight in a restaurant (with no video camera available), Byron held a piece of Papadam (an Indian crunchy bread) in his left hand, then brought it to his mouth and bit it– yeah! He did this several times. In order to release the bread he had to sort of do a tossing motion instead of dropping it, but it was just fantastic to watch. He has SO much more awareness of his left hand and arm.

They gave us another list of things to work on this weekend; using his left hand to open and close doors and drawers, finger pointing, grasping and releasing balls etc.

My highest wish for this experience was that Byron would realize that his left hand is there and works, and to learn to use it as an assist for most functions. I think we are solidly on the way there.

His speech is improving too. He will try to repeat and sound out most words that I ask him to, instead of giving me a blank stare or ignoring me the way he often did. His knowledge of colors is improving, he solidly knows blue, green, purple, brown and red; yellow and pink sometimes. He can repeat the numbers 1 to 10 both forward and backward as long as he is saying it along with you (and if you drop one out he will 9 times out of ten insert the right one.) He can also sing the alphabet along with the song. There is some evidence that by awakening the “wiring” to the hand and arm, it improves other parts of the brain as well. Very exciting stuff!

More Progress

2009-09-10T20:14:00.015-04:00

Yesterday I became the owner of an apple laptop. For Byron fans, please indulge a little computer digression… I have spent the last 1 ½ days adjusting to life without Microsoft. My transition to the new Mac book Pro has not been as seamless as I might have liked but I’m making progress. For example there’s no easy right click on the touchpad – what’s up with that? The tech support at Apple is excellent and they have walked me through setting up e-mails, iphone , moving files over etc. I think they take a special glee in bringing a die hard pc user over to their side. I am writing this on the mac so …so far so good.

I finally learned that to right click you simply press and click with two fingers instead of one. Hmmm.. very neat. For you iphone users, turns out one of the coolest things about the Macpro is the touch pad. It works just like the iphone screen, you can pinch your fingers to zoom in and expand your fingers to move out, rotate pictures by rotating your fingers etc. Very cool.

There are still great things about the PC. I had the chance to beta test the new Windows 7. That is an excellent system. I will sorely miss the gadgets on the desktop, especially the easy Facebook viewer. Mac has widgets but they disappear and reappear with an f12 click. Not too happy about that but I have heard that there is a workaround to make at least one of them constant. I’m too new to be a mac hacker just yet though.

10 DAYS IN THE CAST AND GOING STRONG Byron is gaining so much strength in his left arm and hand. See these two videos side by side of Byron pushing down on the popcorn ladybug toy. At first he couldn’t make the popcorn pop, now he really can!

He is also gaining better control. He has more control and persistence in this video of the sticky ball game. Video one a few days ago, video two - today.

The blue tape is kineseotape. It provides stimulation, support, and a gentle nudge for the muscles to move in a certain way. When we arrived at Kennedy Krieger they asked us if we were ok with taping and we said yes. Byron has been receiving Kinesiotape from his home PT since he was 4 months old.

Bob is taking him in to Kennedy Krieger tomorrow. Byron loves it when Bob is there when he gets out. Mom get’s the day off – yeah!

A Year Ago

2009-09-09T21:19:00.000-04:00

Today I found a photo of Byron taken one year ago when we visited Kennedy Krieger. We came to Baltimore so that he could be evaluated to see if he qualified for the Constraint Program. It was taken at a park here in Lindsay's neighborhood. Tonight I took another one at the same park. Such sour expressions - tee hee.

Kennedy Krieger determined at that time that Byron would be an excellent candidate. We are so glad that they did!

Onward!

2009-09-08T20:51:00.000-04:00

Byron’s is doing so well – amazingly well for having a sticky, grass filled cast on his arm 24 hours a day (they cleaned it today). His vaccination snafu is all cleared up; the doctor faxed a letter of explanation and it was accepted – few! And his shirts are no problem. I was so worried about getting shirts over the cast but regular short sleeve shirts, once size larger, have all been fine.

The therapists and I met this morning to discuss Byron’s treatment plan and goals. They have very high expectations for him. I asked them if they felt he was on his way to meeting them and they said emphatically, “yes!” and that he was improving every day. By the end of the program some of the things they expect he will be able to do are:

Carry a small weighted bucket with his left hand for 150 feet

Pick up a one weighted golf ball at a time and put it in a maze.

Grasp finger foods and bring them to his mouth with minimal assistance

Grasp cymbals and bang them together 3 times

Isolate his left index finger and point to pictures.

Bring a two handed cup to his mouth with no spills

Push his left arm through his shirt 75% of the time.

Ok so here’s the deal, don’t judge, but tonight we visited the suburban mecca Chuckie Cheese – and it’s great! What a fabulous place for a toddler. Lots of climbing things, buttons to push, lights to watch and Bob the Builder! As some of you know, Byron loved to visit the Bob the Builder ride in our local mall until last month. They replaced it with a very bland train. Byron never openly showed he was upset, but boy was he happy to see Bob tonight!

Old Friends and New Games

2009-09-07T19:49:00.002-04:00

Labor Day was spent with Bob’s coworker and roommate when they both worked in Detroit. Drew and Barb live an hour north in Hagerstown, MD. Barb is an amazing graphic artist, scrapbooker and stamp expert. She has over 10,000 rubber stamps! Drew still works at Lockheed and is renovating his house - think Murphy Brown ;)

In my life I have found three or four bests in the world (for me): Bagels - Second Avenue NYC, Pizza - that place under the Brooklyn Bridge, Chocolate - Richart and Barb's Hagerstown COTC. Barb cooked the most delicious corn on the cob I have ever eaten in my life. It was a local specialty white corn that does not even need butter or salt. I ate three naked ears in sheer pleasure. She said it is hard for her to eat corn anywhere else and now I too am ruined forever.

When we got home, Byron and Bob played the new sticky ball game. It’s REALLY helping him want to use his left hand.

Happy 91st Birthday Dad!!

Progress Videos

2009-09-06T20:20:00.000-04:00

Six Days CIMT -

Port of Discovery

2009-09-06T19:26:00.000-04:00

We spent today at Baltimore’s Port of Discovery, a wonderful Children’s Museum in downtown Baltimore. The center of the museum is a three story climbing apparatus with slides and rope tunnels. There was a also a mock diner, a grocery store with real cash registers and products the kids could scan and a wonderful water play area. They will be opening an exhibit on the 19th to help kids understand their peers with disabilities. We look forward to going back then.

Watching Byron in the museum I began to think about his progress. He has been in his cast for six days now.

What I have noticed is :

an overall relaxation in the left arm

a more open hand

a general willingness to use his left hand.

an increased ability to open and close his hand

more ease with using two hands to hold largish balls

Most of what he does is still gross motor e.g. raising his arm to push a button with a closed fist, which he did quite often in the museum. (He pushed buttons a lot more in the museum with his left hand than he ever would have a few months ago.)

Later today when we tried to have him complete his homework of picking up and releasing eight balls into a bag, I didn’t see much difference in his grasping ability than we might have seen a month ago. What WAS different though was his compliance. He never would have even allowed this activity before, and his hand would have been so clenched that it would have been very hard for him to open it. Now it’s the opposite, his hand is so loose that he can’t seem to hold much in his grasp. I look forward to seeing how It all unfolds in the coming weeks.

New Friends

2009-09-05T21:50:00.001-04:00

Today we spent most of the day at our new friend’s house. Tim and Juliet and their two and a half year old son Brandon, hosted us in their lovely home in Baltimore. They live in an historic enclave which has the most wonderful homes, many housed by working artists. Their son Brandon also has left hemiplegic CP and he has just completed a constraint therapy program through a different organization in Baltimore. He’s scheduled to be at Kennedy Krieger next year. We shared tips, toys, wine and good conversation. And they gave us a wonderful tour of their magical neighborhood. We will be returning next Saturday for more adventures. Juliet greeted us at the door with the most touching welcome surprise, Byron Cookies!

Practising throwing rocks into the clear pond using left hands.

The road weary toddlers get a lift home.

Byron did all his homework quite well with Brandon and his toys as inspiration.

Long Weekend

2009-09-04T20:22:00.002-04:00

Byron is off from Kennedy Krieger until Tuesday. They sent us home with a weekend schedule to make sure he doesn't backslide. Every day with his left hand he is supposed to:

1) Pick up eight golf ball size balls and put them in a bag
2) Pick up a soccer size ball with both arms, keeping his arms to the side of the ball instead of on top.
3) Pick up and eat 5 pieces of finger food.
4) Crawl down a long hallway.
5) Point to five pictures in a book using his index finger.

Whew.... And they gave us a sheet to take notes on each day about each activity. I don't know where we are going to get all those balls! When I saw this list I immediately asked the therapist "Can he do any of these things?" (Kind of makes the morning success a little puny). She assured us that he was working on all these things, and that while he couldn't do them perfectly yet, the purpose was to keep him working on them.

Ok - so we're on!

We had a little hiccup today regarding his vaccinations. Apparently he is missing his mumps vaccine. Byron's pediatrician is very liberal when it comes to vaccines, and split up his MMR into M, M and R to be given separately over a few months. The problem was that they ran out of the separate M (mumps) before he could get it and the doctor may not be able to get more for some time. He assured me that this wouldn’t be a problem and we could just wait until Byron’s next full MMR when he is older. Not so fast…Kennedy Krieger has a policy that all kids must be fully vaccinated. When the nurse pulled me aside this morning to give me this news, my mind immediately overreacted. “That’s it! Now we have to go home. Poor me. Poor Byron. etc. etc” But we worked it out, fingers crossed, that the admin here will take a fax from my Doctor stating all the why’s and wherefore’s so KKI can have the record in their file. I’ll find out on Tuesday if it was accepted. If not, well, I guess the next step is the local yellow pages under “vaccinations – STAT!”

Day 5 Starts off with a bang!

2009-09-04T09:13:00.000-04:00

Byron just picked up a small block with his left hand and dropped it in a bag!!! More later....

Byron on the Slide

2009-09-03T22:35:00.000-04:00

Some people were having trouble seeing the videos uploaded from the blogs uploader. Here's a video of Byron from today uploaded using YouTube. I think this will be easier to view. You can see he does use his left hand momentarily while on the slide.

Another Beautiful Day

2009-09-03T20:46:00.018-04:00

Baltimore's weather has been gorgeous. We came to Baltimore from one of the wettest summers in New York history. The Baltimore blue skies and low humidity have put us all in good moods, even Byron with his arm club. (He enjoys using his cast to wack things).

Kennedy Krieger has several high tech buildings. Byron's therapy is in their cozy, low tech school building.

Byron is making some progress with his left hand usage. Today he unrolled most of a roll of toilet paper with his left hand. Not the most desirable activity but fantastic none the less!

Tonight, in solidarity with Byron, Bob and I wrapped our right arms in casts too - well just ace bandages. At first Byron kept shouting "off, off! " I think he didn't like seeing our arms like that. Eventually he really liked it.

Back at the Beach.... Here's what the rest of our family is doing... (photo credit Lindsay)

A Baseline

2009-09-02T20:07:00.008-04:00

The day at the Kennedy Krieger Constraint Program is divided into two sections, AM and PM. Byron has the PM and another little boy has the AM. Each child has a Physical Therapist and an Occupational Therapist. Wednesdays, the boys both come in the AM so that all the therapists can make rounds at Johns Hopkins in the afternoon. Today was Wednesday so we watched both wild 2 1/2 year olds running the hallways with their big white casts.

Byron's therapists are named Meghan and Erin. Both are young and very sweet. When we arrived this morning Byron squealed with delight and had no trouble leaving me behind as he ran down the hallway with his therapist. So much for separation anxiety!

While his therapists said he is doing well in his therapy, at home he doesn’t want to use his left hand much at all. We took a couple of videos so we’d have a baseline to keep checking against. We’ll repeat these activities (and others) and video them every few days to mark his progress.

Here is Byron watching his favorite show, Yo Gabba Gabba tonight with his bottle. I actually thought this was a Baltimore hat. Oh well…

2009-09-01T21:21:00.012-04:00

Today when I picked up Byron at three o’clock he had the funniest looking cast on. I guess they molded it so that it would be removable but the duck tape is a stitch! It looks like something my husband would scrap together in his shop. But it does the trick, no more right hand and arm. Byron seems very happy at Kennedy Krieger, and in general. The people are very nice and I know he is reveling in all the attention. Only once did he ask to take the cast off, and when we said no, he left it at that. His Physical Therapist said the CIMT kids usually have trouble getting to sleep the first night. Not our little man. He crashed immediately. We did wear him out at the local park first.
Overall he still has very limited use of the left hand. We had to feed him this evening, put his pacifier in his mouth, and hold his bottle. He did hold on to the swing and manipulate a little toy at the park for a few seconds.

While Byron was in therapy today I drove around Baltimore. It’s a wonderful and mysterious place. My father completed hi s undergraduate education at John’s Hopkins during the great depression and has very fond memories of the city. So I wanted to take a look. Like so many American cities it has been hit hard by the slowdown of manufacturing and railroads. It has enormous economic variety from block to block. Right next to a sign on the Johns Hopkins Hospital that says “2010 – America’s Number One Hospital” (which is no small thing) are block after block of abandoned row houses. The street looks more forlorn than Newark. Then, just a few streets up, are the most stately, gorgeous homes you can imagine. Even when in ruins, the architecture is quite lovely. The waterfront has had a renaissance and is quite modern and lively. I look forward to seeing more of the city. We have a play date on Saturday with a little boy who did the Constraint Therapy program just a few months ago. His family lives right in Baltimore and is eager to show us around.

A Lovely Place to Stay

2009-08-31T20:37:00.002-04:00

A word here about the generosity of our good friend Lindsay Satterfield. Lindsay has so generously lent us her wonderful two bedroom apartment for the duration of Byron's treatment. It turns out that his therapy exactly coincided with Lindsay's annual beach trip to South Carolina. She also took our dog Daisy with her. Daisy loves the beach and this gives us the freedom to just focus on Byron. Lindsay's apartment is about one hour from the Kennedy Krieger Institute. We spent the weekend exploring multiple routes into Baltimore and have finally settled on the most direct route via the Beltway. I'm a little scared of that road but oh well. The other routes pass gorgeous estates and horse farms, but they are a bit longer mileage wise and can be very sloooow.

We are so comfortable here and have everything we could possibly need.

Thank you so much Lindsay! We love you!

Info About the Cast

2009-08-31T20:24:00.000-04:00

Byron's cast will be put on tomorrow. Today they just took a mold. I was reading about the cast this evening in the pages of info they sent home with us. The cast will be waterproof and must be rinsed everyday. He can even swim with it on! Apparently you don't take it off to rinse it, you use a sprayer to get inside the cast, between the cast and the skin, and then let it air dry. The booklet says it takes about an hour to dry. I have to say it would drive me crazy to have a damp snug thing against my skin, even for an hour. The cast will be semi permanent i.e. it will be removed and checked once a week. Towards the end of the program it will be removed for good and he will have five days of bi-manual therapy to integrate what he has learned. Occasionally he will go on field trips. I was thinking zoo, aquarium etc. No - What they mean are places that he might go when he gets home, the mall, library, grocery store. I think that's pretty cute. They will take him swimming towards the end of the program. It does seem strange to me to leave him somewhere every day for 3 hours. That is the most I will have consistantly left him by himself. Perhaps I will grieve, or perhaps it will be a nice break!

Byron's First Day of CIMT

2009-08-31T12:35:00.000-04:00

CIMT = Constraint Induced Movement Therapy.

Byron has his first day at the Kennedy Krieger Institute in Baltimore. MD today in their prestigious CIMT program. The hours for the first day are 9am - 2pm. Today will be an evaluation day.

Around 11:00 we met the medical director and founder of the program, Dr. Pidcock. We found out a few weeks ago that he is my sister-in-law's brother! He was wonderul and after meeting Byron, said he was a great candidate for the program. I'll try to get a picture of him tomorrow. Right now Byron is off with three different therapists.

Husband Bob and I are waiting to pick him up. They have given us a little room with internet access so we are having a good time. I just played internet scrabble with my friend in France and Bob is working. Right now it's 12:30 pm and they are casting Byron's right arm so that tomorrow they can put on a permanent, waterproof cast. This will prevent him from using this arm so that he will develop skills in his left arm and hand. Byron has left hemiplegia caused by a stroke to the right cerbral artery before birth. He has good use of his left leg but limited use of his left arm and hand.

We will be back here every weekday from 12:00 noon until 3:00 pm for four weeks or so. Dad and I are not allowed in during therapy so I will probably spend time at the YMCA down the road and Bob will work. Can't wait to see the little guy with his new cast!