Again?!

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"

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

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

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

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

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

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

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!!

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!

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!

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

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?

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

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

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

TGIF!

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

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.

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

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

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?

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

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

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

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!