Happy Halloween!

Tonight was Noah's second Halloween but his first experience trick-or-treating.  We dressed up head to toe in our matching turkey costumes and just went down the street to a couple of houses.  It was a lot of fun and Noah had a chance to get some great goodies.  He has just mastered the sign for "more" so he put it to good use showing off to get more candy.  Always such a cheeky little boy!

In addition to being Halloween, today is the last day in October and the end of a very long month.  October 1st marked 6 months from Noah's first MRI and his stroke diagnosis.  Because it had been 6 months we had a ton of appointments this month and I felt like we were at Children's every other day.  I am so grateful for being so close to such an amazing hospital but I never thought I would ever be there as much as we have or I would ever know my way around there so well.  The big appointment of the month was Noah's follow-up MRI.  Although Noah didn't handle it as well as the first (I swear Noah knew something was up the minute we walked through the door) there has been no change since April.  We reviewed the results in the stroke clinic last week and we are very thankful that nothing has changed.  The neurologist who runs the stroke clinic, Dr. Rivikin, said Noah was doing amazing and said we had to continue to be "aggressive" with his therapy.  It was very encouraging to hear and I think it gave both Brad and I the extra motivation we needed to keep up with Noah's home exercises and constraint therapy.  I have to admit it's not easy trying to do his exercises every day, get him to all his therapy and doctors appointments every week, and just be a normal new mom with a one year old.  There are days when I'm totally overwhelmed and I have no idea if I'm coming or going.  I have to stop myself and look at Noah and see how far he's come.  I know we have no other option but to keep moving forward to help him in every way we can.  He is doing amazing-army crawling, starting to baby sign, and even pulling up to a kneeling position.  A doctor we saw this month took a look at Noah and couldn't believe all he had accomplished already given the extent of the damage he had seen on his MRI.  It truly is remarkble how the brain can compensate and adjust in so many ways.  I'm so proud of my little man and can't wait to see what he'll do next! 

Although the month was filled with a lot of appointments it was broken up by some wonderful things including Noah's 1st birthday, my brother Martin's 30th birthday (with a great trip to Miami), a great friend's wedding, and our 11th Canadian Thanksgiving with our friends.  I am so thankful for all these wonderful events and the amazing family and friends we spent them with. It definitely made the month easier for all of us and their love and support keeps us going everyday. Here are a few pictures from the month!

Noah is 1 year old! October 10, 2011

Our baby boy is not really a baby anymore!  He turned 1 on October 1.  Some pictures from the messy event!

He absolutely loved the cupcake - and the piece of cake he had the next day!  Susan and I cannot believe how time has flown as he looks more and more like a little boy everyday, and less and less like a baby.  He certainly has quite a little (or big!) personality developing and has certainly inherited traits from the both of us already.  While not naming names, he sometimes throws a fit when he doesn't get what he wants, he gets very testy when he's hungry and he has amazing determination...he's also laid back, loves to throw the ball around, smiles and waves at everyone and is amazingly happy and content - almost to a fault.

The weekend certainly brought a whole host of emotions for us - mostly happy and excited feelings - which was great - but also a few sad thoughts.  His birthday, after all, was 6 months to the day from when we received his diagnosis and it's hard to think about the things he should perhaps be doing at this age, but is not.  While he continues to make progress, he still doesn't use his right arm much given the choice.  He doesn't pull to standing nor does he seem close to trying to walk.  He also doesn't seem to possess a spoken word that he actually knows its meaning.  These are the things that Susan and I constantly worry about and why sometimes we have bad days.  When people politely and honestly ask how he is doing, we always try to stress the positive and highlight how well he's doing.  But, at the same time, we worry about these things - things that aren't going so well - and we don't bring them up.  It can be hard and, I think, it's largely due to the fact that these things scare us and we don't like to think about them too much ourselves, let alone burden others.

Anyways - he is babbling all of the time these days...different sounds and "words" coming out of his mouth everyday.  He has this really cute little wave he does - just moves his hand, kind of like a politician or the Pope does when riding through a large crowd.  And, the most exciting new development - he has started crawling!  Just within the past couple weeks - he has started this funny army crawl!  This is kind of what we expected he would start out doing - if he crawled at all...and that was certainly an "if".  We are really excited as, if his crawl evolves to a more traditional one, it will do wonders for strengthening his shoulder and arm.  However, even this army crawl will help - take a look at the video we shot last weekend below.  Even just a week later he is doing a much better job of keeping his right arm in front of him...we are proud parents indeed!

   

September 13, 2011 - It's Been A While...

Wow!  We knew it had been a while, but to log on and see the July 5 post was our last...time flies.  We'll be better about keeping this up to date in the fall.  Over the summer, we had a busy July filled with doctors appointments, therapies and group class as well as a wonderful visit from Noah's Grammie and Grampie (down from Canada).  August was a time to slow down a bit and spend a week on the Cape with great friends.  Noah had been afraid to go in the water, but we eased him into the ocean that week and he loved it by the end.  Now we're into September and we're thinking about the Red Sox fading, the promising new Patriots season and - most importantly - our little baby turning 1 year old on October 1st!

It's amazing to think about all that has happened with him since April 1 - the day we received his diagnosis.  Blood, sweat and tears.  For Susan and I, who see him everyday, we often lose sight of the progress he's making physically.  But thinking back and listening to others who don't see him so often, as well as his therapists, he really is doing well.  We've posted some recent videos of our constraint therapy sessions below - we try to do these twice a day for 30 minutes each time.  He sees Sandy, his physical therapist, twice per week and he sees Jessica, his occupational therapist at Children's once every 6 weeks (which we're working through red tape to get much more often).  He's not quite ready for opening day tee ball, but I guess he's got a few years until that time anyway.  So, physically we're encouraged, though to us, it seems to still be moving slowly.  Cognitively, he seems to be doing quite well (knock on wood - I just smashed a chair).  He makes all sorts of noises, he babbles "words" all the time (Dada is his favorite!), and he has all sorts of different squeals, screams and screeches of delight...he's got a set of pipes that you can hear down the street!  He's curious, he's inquisitive and he's figuring things out like a child his age should (I can't really call him a baby anymore - he's 25+ pounds these days!).  And, he's happy...happiest baby (oops) I've ever seen.  He smiles at anyone with a good soul - and he can tell.  He waves "bye-bye", he points at things he's interested in and he gives big open-mouth kisses to his favorite people and things. 

We'll keep this post somewhat brief - even though it's been a while.  We will be better about updating - don't want to post all our material at once!  Enjoy the brief videos: 

July 5, 2011 - Happy Birthday America

Just back from a great long weekend.  We drove down to the family house in Plymouth for the weekend and also made a day trip to see friends in Chatham on Sunday.  Weather was perfect and we got some much needed relaxation...I would say "rest" and relaxation, but that would be a lie as Noah was up by 6 every morning at the latest.  Thank you to my parents and brother for putting up with his squeals of joy at that hour.  While he was up by 6, he slept well in the pack-in-play all weekend, which is always a little iffy, sleeping through the night each night.

Plymouth was great -  we had a clambake, enjoyed fireworks, had babysitters so we could go to a belated birthday dinner for Susan and played some golf - my Mom volunteered to babysit one day so we even got to play together one day!  Down in Chatham, we had what has turned into an annual get together at one of our friend's house.  This year it ended up being dubbed, "Babyfest" as Noah was accompanied by a 1 1/2 year old girl and a 7 month old boy (he is now 9 months!!!  where does the time go?).  It was great to see the interaction between the kids as well as having all of the adults to help watch the kids!  While most of us enjoyed time by the pool on a beautiful day, Noah did not - he wanted nothing to do with the water...very upsetting to his swimmer mother.

We set up Noah's play/exercise mat in the living room in Plymouth with a bunch of his toys from home and it worked out great...he is doing so well - we'll get a video up shortly of him doing his exercises so you can see first hand.  He is really getting active when in the constraint - really going after his toys which he loves to knock around.  We need to start working on some more dexterity skills as he doesn't have much fine motor control with the right hand yet, but his gross motor skills are really coming along.  Even when not constrained, he will go after toys, reach for things voluntarily and even doing some two-handed play.  While we are cautious to get too excited, I think we are both really happy with the progress Noah is making with the use of his right arm.  It was just 6 weeks ago when we started the constraint therapy and his usage and range of motion are night and day.  We do exercises twice a day ourselves - usually 25 minutes in the morning when we wake up (he is at his best in the morning) and then another 15 or so in the early evening when we get home.  He also has a physical therapist twice per week (once at our house and once at daycare) and then an occupational therapist every 3 or 4 weeks at Children's Hospital.  Needless to say, the schedule is hectic, but it is worth it to us, and it's amazing how we have all adapted...it's just our lives now. 

He continues to increase the spectrum of noises he makes which has us hopeful that his speech may not be impacted drastically (though likely it will be affected).  We are currently working to get him to crawl...you can tell he wants to, but he just doesn't have the strength in his right arm/shoulder to be able to do it.  Cognitively, he seems to be progressing pretty well.  While it's obviously tough to tell how a 9 month old is doing in this area (speech as well), he seems to be doing the things that babies his age should be doing.  Additionally, his personality remains electric.  He lights up everyone with his smile, he brightens every room he enters and he adores other kids (especially the little girls!).  I've said it before and I'll say it again - he truly is a special little boy...our job now is to make sure he can do everything he wants to do as he gets older.  I think we're heading in the right direction. 

June 11, 2011 - It's Been a Little While

First, let me apologize to anyone who is (trying to) regularly following this blog - it has been a while - 10 days since our last post at the conclusion of "The Streak".  I guess when you take one day off, things slide from there quite quickly.  Anyone who has ever dieted or tried breaking a bad habit or even attempted a daily exercise regiment like running can quickly attest.  While we do not plan to post daily going forward, we do plan to post much more frequently than we have recently.  As such, I believe if you officially "follow" the blog, the site can then send you a notification whenever we post a new entry (though don't quote me on that).

Susan wrote the post on the last day of the streak, so I wanted to just take a few words to try to express my feelings about the whole thing.  I can actually sum it up quite easily as truly the most amazing experience of my 33-year life.  The roller coaster of emotions since that horrible day - ironically April Fool's Day, 2011 - has been somewhat indescribable.  Disbelief, shock, anger and sorrow - the likes of which I could never wish upon my worst enemy...my baby boy suffered a stroke before he even had a chance to cry out loud for help.  His life was forever altered - and will always be more difficult than mine - before it ever started.  When most are happily playing, crawling, laughing and learning as babies should, Noah is in therapy, seeing doctors, being carted around children's hospital and having his "good" arm strapped to his body so he can't use it while being forced to use his "bad" arm which is so difficult for him.  I think, "why did this have to happen?" and, "what did we do wrong?".  The answers, I know, are - Noah was the unlucky 1 in 4000, and nothing.  Knowing the answers doesn't make it any easier.  But at the same time as these terrible feelings and thoughts have been with me, I have also experience happiness, joy, excitement and amazement - the level of which I hope, but am not sure, that all new parents get to experience.  My son survived.  He is the happiest baby I've ever seen - his demeanor draws in everyone around him.  He is the cutest baby I've ever seen - yes, I'm biased, but come on!  He is curious, creative and strong.  Anyone who knows Susan and I also knows that we have many faults...at 8 months of age, it's as if Noah has inherited only the good from each of us (except perhaps for his mother's "snippiness" when hungry!) and it is amazing to see him develop.  Thinking back - it seems like so much longer than 10 weeks since we received his diagnosis...the days fly by, but time seems to have slowed down.  So many thoughts, so many feelings - this blog has really been a great outlet for me and I thank you for continuing to read.    

What has happened is the past 10 days - I guess a lot; and not much.  We have started the routine of constraint therapy with Noah twice per day - once in the morning shortly after we wake up (these days, about 5:30) and then again in the afternoon/early evening.  As a refresher, the constraint therapy involves wrapping what equates to an ace bandage with a sleeve on one end around his body and restricting his "good" arm.  We then sit and play with Noah - trying to utilize his most enticing toys and forcing him to use his "bad" arm.  Noah is at his best in the mornings and we have been able to use the constraint for up to 25 minutes so far - slowly increasing the time periodically.  In the afternoon/evening, it's usually a little tougher as his patience is thin and he's usually getting tired - we shoot for 15 minutes then.  How is it working?  Well, take a look:

The video is too big to post the whole thing here, but he started grabbing for the fruit bowl and the water pitcher shortly afterwards!!!  It was fantastic! 

We try not to get overly excited for these kinds of things as we know it's going to be a long, slow process - we have a long ways to go.  It's only been a little while since we started the constraint therapy - 2 weeks.  It's only been a little while since we started with the occupational therapist (Jessica) and the physical therapist (Sandy) - 2 weeks and 9 weeks respectively.  And it's only been a little while since we found out about Noah's diagnosis - 10 weeks. But, a lot can happen in just a little while...and more in a long while.        

May 31, 2011 - Made it Through the Streak

Happy to say that we successfully made it through our streak!  Honestly can't believe that it is May 31st already.  This month really seemed to fly by and I'm a little sad that the streak has come to an end.

Pediatric stroke awareness month and the "streak" campaign couldn't have come at a better time for us.  It gave us an opportunity to put our story out there and express our thoughts and feelings about Noah.  A month ago we were very lost and were having a difficult time trying to figure out how to cope with our new reality.  We felt as though our lives had been turned upside down and we didn't know how to make sense of things.  I think since then we have come a long way.  Each day has gotten a little easier and I feel more comfortable talking about Noah, his diagnosis and our future.  We know what needs to be done for Noah now and we have a plan in place.  That's not to say that I don't still have days where I feel sad and think why did this happen to our little boy.  I know rationally there was nothing that I could have done to prevent this but I still often wonder if I could have done something differently.  These thoughts come and go and I guess they will take awhile to fully resolve.  When I get down, all I have to do is look at Noah and I know I have to be strong for him.  Even with all the crazy doctors' appointments, therapy appointments, bloodwork, and numerous tests he has had in the last 2 months he has always had a smile on his face.  I hope that he keeps smiling and that Brad and I will be smiling with him through this journey.

And so the streak comes to an end.  We want to thank everyone for all their love and support and to those of you who decided to streak right along with us.  It means so much to us and it truly has made getting through this difficult time much easier.  We will continue to blog because although our streaks have finished Noah is just getting started.  I have to say only 6 weeks into therapy and I can already see a difference.  Sitting in the car with him today he reached to grab 2 toys with his right hand without me coaxing him or holding down his left.  Truly amazing to see!  Was able to get the video of his therapy to work-hope you enjoy it!

May 30, 2011 - Final Canada Day

Today is our last full day in Canada - we'll miss it for sure.  Have had a absolutely fantastic time - Noah has loved pretty much every minute of it.  He has been the center of attention for 4 days now - just like he wants it!  All of the attention and the crisp Northern air led him to an early bedtime tonight...around 6:30 or so - he probably could have gone down quite a bit earlier if we had let him.  Gave him his bath outdoors on the porch this evening as it was quite warm up here - seemed like he was hot actually and we had him wearing just a onesie.  Dreading the long drive home tomorrow - we left Thursday evening and he slept most of the way on the way up...we won't have that luxury tomorrow and need to have an almost 8 month old make a 9 or 10 hour drive during the day.

All streaks remain in tact - we did some more constraint therapy this morning.  We have video so you can see what it's like - he does really well, but we can't get the Canadian Internet to post it.  I think it might be harder for us to see than it is for him to do...here's a picture while we work on the video.

May 29, 2011 - Canada Day 3

Another great day in the Great North!  Brad played golf with Grampy and Uncle Martin (aka Uncle Remus) while Noah and I spent some quality time with Grammy.  He had a good day with his constraint therapy and he did 15 minutes in the morning and the afternoon.  The big activity I had him do today was knocking over a pyramid of cups with his right hand/arm.  I couldn't believe how well he did!  With a little encouragement he was doing it all by himself and was quite excited about it.  Makes me happy to see him tolerating it so well and hope he keeps it up.  I'm beat from the Canadian air-here are some pictures from our day...almost forgot - Uncle Remus changed his first diaper (we'll save you that picture!).

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May 28, 2011 - Canada Day 2

All streaks remain in tact (though daily blog posting has been a bit delayed - we'll blame Canada).  Noah had a full day of activity and was really ready for bed by about 5pm....we kept him going until about 6:30 so as to not throw him off too badly.  Anita and Janet made the drive down from Toronto to visit for the day.  Noah loved having a new audience for the day.  Lots of play time - we took his foam mat outside on the patio and he was able to roll around and have all sorts of fun with everyone - including Gracie the Dog. 

Two stints with the constraint wrap to work on his right arm and he did really well!  The morning session he didn't even make a peep - the afternoon he complained a bit while we put it on him, but then rather quickly went about playing.  We try to have him go for 15 minutes, twice a day at this point.  We base it on how he tolerates the constraint with the goal being to gradually increase the time.  The constraint itself is like an ace bandage with a sleeve on one end - you slide his arm into the sleeve and then wrap the rest of the bandage around his body so it keeps his left arm (strong arm) in to his body.  This then forces him to use his right arm (weaker arm) to play. 

We continue to see progress - baby steps - and that is what we want.  He is happy as ever as ever and is starting to acknowledge that his right arm is part of his body...exciting stuff north of the border! 

May 27, 2011 - Streaking North

We made it up to the Great White North - to Canada - to see Noah's grandparents!  Long drive, included a stop at a Comfort Suites near Rochester for a few hours of sleep, but we made it!  We left on Thursday evening to try to coordinate with his sleep schedule - worked pretty well but had to stop around 2 am for some shut eye.  Of course, Noah didn't care that we had been up late the night before and he woke up at his usual 6 o'clock hour anyways. Noah was fantastic in the car.  He slept the whole way on Thursday evening, went back to sleep in the hotel after he woke up during the transition from the car to the room and then made it the rest of the way on Friday morning with just one bad stretch shortly after the border.

Noah's uncle and his girlfriend are here too.  It's great to see everyone - we haven't been up in 2 years - nice to have the extra hands and the little guy is in full-on ham-it-up mode...he constantly looks around the room to make sure everyone is paying attention to him.  He even didn't care when Susan had him in the constraint brace to do 15 minutes or so of focused play.  Actually, he was too distracted by all of the interesting people to even really do much focused play...we'll need to figure that one out.  North, South, East or West - always need to go forward, side-by-side with Noah.

Survived the First OT

Well after a month of waiting we finally had Noah's first OT session and our first experience with "constraint" therapy. Honestly not sure if it was harder on Noah or myself! The therapist was wonderful and walked us through the benefits of the therapy as well as step by step how to do it at home with Noah. It was clear that she was very knowledgeable in regards to constraint therapy and had worked with children similiar to Noah before. This definitely made it a little easier to handle. She explained to us that the constraint therapy works well with the younger children as it helps them to become more aware of their affected sides. It also helps to "re-wire" their brains. There are a number of research studies on this type of therapy-I will try to post some links this weekend.

In order to restrain Noah's left arm she placed it in a ACE wrap sleeve and then wrapped the ACE around his left arm and body to keep it snug against him. It is pretty ridiculous looking-almost looks like a half wrapped mummy. I will post a picture once I get more used it as right now it all still seems-and looks-cruel. I know it is best for him but it is hard to have to do it. As usual it didn't really seem to phase Noah and he actually tolerated it a lot better than expected. The therapist said he was one of the best babies she had seen. He never ceases to amaze me and I don't know where his demeanor comes from-must be Brad! So after he was all "wrapped up the therapist had him try to play with a series of enticing toys. The first was a ferris wheel type of thing with bright colors that spun when you touched it. Noah was able to spontaneously raise is right hand and bat at the toy to make it spin. He did this about 5 times and I started to cry. It was so amazing to see him using his right arm. She helped him play with a few other toys with his right and then after about 10 minutes he had had it. Short amount of time but great progress.

In addition to the constraint therapy she also made Noah a splint to wearer on his right hand at night. It is to help stretch out his thumb because that seems to be the most stiff. He has been doing great at relaxing his hand but his thumb still tends to be tucked into his hand making it harder for him to grasp and hold objects. We'll see how well he toleratesit!

Overall a long day but feel good about a future plan to help Noah. Will try out both the therapy and splint in the next couple of days and keep you posted.

May 25, 2011 - Headed for OT

All streaks remain in tact...not too much else to report. I got stuck at work a little later than usual and only got to see the little guy for about 20 minutes or so - not a good day in my book. Tomorrow we head to Children's for Noah's initial occupational therapy (OT) evaluation. We're a little nervous as we don't really know what to expect. The big idea that has been thrown around is constraint therapy - for which he would be fitted with some sort of "brace" that would restrict his strong hand and force the use of his weak one. Seems cruel, but apparently the results are typically very well worth it. We'll let you know how it goes.

May 24, 2011 - Striking a Balance

I'm not going to lie, I was pretty sore when I walked out the front door this evening to take my run.  My legs loosened up pretty quickly, but the every day grind is taking its toll.  Got me thinking about what I would do when May comes to its close in a week.  I don't want to stop running, but I think scaling it back a bit would be the right thing to do for my legs...perhaps every other day with some other form of exercise on the odd day.  I don't want to let this end with the end of 2011's Pediatric Stroke Awareness Month - it won't for Noah - and so it won't for me either.  A similar thought actually helped me finish the run strong this evening...was really sucking wind, but thought about what I would ask of Noah in a similar situation...one more exercise, one more stretch, one more exertion of effort that could potentially make a big difference in his quality of life.  How could you ever stop running with that thought in mind?!

But, should I feel guilty?  Should I feel guilty about not running every day once May ends?  Should I feel guilty about thinking about ending my run a block or two early tonight?  I think the answer has to be no - I just need to convince myself of that.  Susan and I often talk about trying to help Noah strike that balance between working and exercises that will only help him in the long run with also allowing him to just be a normal 7-month old boy.  It's easy to get carried away with the work aspect as you know every little bit will ultimately help him.  But, he is a baby and he needs to have the chance to do normal baby stuff too.  It's a difficult tightrope to walk, and we do it every day.  There is no right answer and there's no manual or playbook to go by. 

Eight months ago, our most important decision was between blue and green for his room.  Eight years ago my most important decision was between Bud Light and Coors Light on Thursday nights.  Today, things are a little different.  Trying to strike that balance today has become slightly different to say the least.  Life can certainly change in an instant....or 8 months...or 8 years.  And that's okay - just need to somehow find that balance.   

May 23, 2011 - Noah's Place

Here we are - 23 straight days Of running and blogging and going strong. It has been an interesting 23 days and we've learned a lot about ourselves, each other, our friends and family and, of course, Noah.

I've learned that, in 11+ years together and 4+ in marriage, Susan's determination and drive has rubbed off on me a bit. I didn't quite know what to expect with this streak. I must say that I am proud of myself and it feels good...makes me think I can handle this fatherhood thing! About my wife - I've learned how much someone can love another person unconditionally. The way she is with Noah each and everyday is amazing, despite the challenges. About our friends - how important they are and how many great friends we have made over the years. It's also been amazing to see those who maybe haven't been our closest friends now become the greatest sources of encouragement and empathy. And, many of out closest friends have been just that - thankfully not a surprise. What have we learned about our families - quite simply, family is truly always there for you. We have cried and laughed with them, talked and sang, walked and run, knowing that they have always and will always be there for Noah and us. Finally - what have we learned about Noah. Too much to write here. These past couple of weeks, he has really developed as a little person and I'm so proud of what he does everyday. As I've mentioned before, even at this young age, he has a personality that you just want to be around and he truly is a special boy. Now it's up to us to make sure that the sky is truly the limit for him, that nothing holds him back from being whatever he wants to be, and he doesn't lose this unbelievable spirit that he seems to possess. An amazing little boy - he'll find his place in this world someday and I have a feeling it will truly be great...but for now, this is Noah's Place...and we couldn't be happier.

Streaking through the Mud Run

Today to keep my streak alive I completed the Hoppin Mad Mud Run up in Amesbury, MA.  I'm happy to report that I made it in one piece but I will be feeling it tomorrow!  Definitely nowhere near the shape I was in before having Noah but it felt great to get out there and finish my first race as a Mommy.  I love doing races and I think that is one of the biggest things I missed last summer when I was pregnant.  Good to start the season off with a fun race that included amazing teammates (thanks Elise, Rachel, and Amy!), a beautiful course, lots of obstacles, and even a swim through a nice cold mud pit!

As usual my number one supporter was there cheering me on.  Brad always comes along for these crazy races-no matter how long they may take me, how ridiculous they are (this is the 3rd mud pit race), how far away they may be, or what the weather is like- he is always there.  He can usually be found cheering me on along the sidelines and then waiting for me at the finish in the beer tent.  Today was no different except for the added bonus of a second supporter-Noah!  It looked like he enjoyed himself despite the cold weather and he got his first taste of of the race scene.  I have a lot of fond memories of doing various runs with my family-the annual Turkey Trot, the Elk's Father's Day run, my first ever triathlon- and hope that someday if he's able Noah will want to do some crazy races with me and we can make some memories of our own. 

In addition to experiencing his first run  Noah also got his first taste of pizza.  Not sure how he managed to do it but when I wasn't looking he swiped the piece of pizza from my hand, immediately shoved it in his mouth and took a bite.  He seemed really proud of himself and I think he loved it!  Noah also had a good day with his right hand which we always love to see.  At dinner tonight I put a spoon into his right hand while I was holding him and gently held down his left arm.  He started moving his arm around and then was able to bring the spoon up to his mouth.  Later as I was putting him to bed and giving him his bottle I massaged his right hand.  I have been trying to do this right before bed as this is when he is most relaxed and doesn't object. Tonight I did it for about 5 minutes and then just let him finish his bottle.  A couple minutes after I finished massaging it he placed his OPEN hand around the bottle and kept it there for about a minute!  This was the first time I had seen this and I was so excited.  Baby steps but definitely steps in the right direction!

Here are a few pics from the race today as well as the "screaming" video.

Noah and Mommy after the race

Noah looking intently at Aunty Elise's burrito-I think he wants a bite of that too!



May 21, 2011 - Saturday with Dad

In last night's post, we mentioned Noah's new favorite thing - mimicking!  We took a great video with my phone today, but can't get it to upload for some reason...we'll try to figure it out.

Susan worked this morning so it was Noah and Daddy time - we had fun running some errands early on and playing later...he went for about 30 minutes in his jumper just bouncing, laughing, giggling and learning about all of the little attachments and what they can do for him.  I love watching him figure things out - can see his mind working right before your eyes.  Makes me happy to see him doing things like that as there are certainly some worries about his cognitive development....always looking for signs that he is doing okay in other areas of his development (other than weakness on right side)....I guess we probably will be for quite some time. 

Noah is 7 1/2 months old now and he does seem to be doing pretty well with most of his development - though it is still early to tell on a number of things.  The various noises and mimicking are good signs for his speech.  He kicks both legs and seems to use his right leg when in his jumper...he also seems to be getting better at putting weight on it when we hold him up to stand.  His right arm is still the biggest concern (for now) and he seems to be keeping that looser and is now starting to realize that he actually has another arm.  As just mentioned - he is certainly curious and seems to be learning well.  We continue to be hopeful, we continue to work hard and we continue to streak for pediatric stroke awareness month.  Thank you to everyone keeping up with this blog - your support is invaluable to our new lives. 

May 20, 2011 - The Screaming Match

Round two of Noah and my screaming match today. I can't help it as it is the funniest thing I've ever seen - if he's in a good mood (which is just about all of the time) he will mimic a scream. I love it and so does he - so tonight we were screaming back and forth after he ate his sweet potatoes and chicken dinner for about 5 minutes. Second night in a row...So cute and we both just laugh.

Otherwise, pretty uneventful day. Busy day tomorrow - Susan works in the morning, we're picking up the new car, need to pick out a new floor for our front porch area and perhaps rip up the old one...I don't know if we'll have time. Susan is running a 10k on Sunday with Noah's Aunt Elise and her friends - seems like the weekend is already gone!

May 19, 2011 - Back to the Rain

As I mentioned in my quick post at 1 in the morning last night (the time this blog shows in actually Pacific time), I just got back from a quick business trip to Minneapolis and St. Louis where it was absolutely beautiful weather...70 degrees and sunny both places.  In contrast, it's apparently been raining in Boston all week - and it was still at it when I returned.  Interesting that I ran on treadmills in hotels when the weather was beautiful and then I come home and run outside in the rain.  Oh well. 

Very happy to be back home - missed Susan and Noah very much.  I was only gone 2+ days, but it felt much longer and seeing Noah today - it seems like he got a lot bigger while I was gone.  Speaking of getting bigger, this kid is a total tank at this point.  It seems each and every day it becomes less believable that he is only 7 1/2 months old.  But, he is.

The overwhelming excitement of the day was our great friends Matt and Megan bringing their new baby girl home - little Emily...we couldn't have been happier to meet her this evening.  She was fast asleep and extremely cute, all bundled up in her swaddle and bassinet.  Noah of course was trying to make eyes at her...she put him in his place by not waking up!  We hope they will be great friends as their parents are!  Relative to a newborn, Noah looked even bigger by the way!

Susan was able to take today off from work as our daycare was closed for its annual inspection.  She took Noah to have a photoshoot at the mall as we hadn't had any professional pictures taken since the Christmas card.  She brought home some fantastic pictures - they really are great and we'll email the link to the photographers website around.  She told me that Noah was an absolute ham and they basically got 100 smiling shots in about 10 minutes.  I logged on a short time ago to witness this for myself, and it is absolutely ridiculous how much of a poser he is...and how cute he is.  If anyone knows of any baby model agencies, please let us know.  He was smiling and posing in literally 95% of the pictures.  It's hard not to laugh at our little ham.  A few of the pictures, you can see his right hand clearly open and relaxed - and that makes each one even better for us.  It might have been raining all week here, but that clearly hasn't phased Noah...Little Mr. Sunshine...

May 18, 2011 - Streaking Through Minneapolis and St. Louis

This will be a brief entry - I'm back from a quick, whirlwind trip through the Midwest and happy to report that the streak lived on hotel gym treadmills each and everyday! Just home now - of course our exit off the highway was closed so cab had to circle around. I'm dying to see Noah, but I do hope that that doesn't happen until the morning! Off to bed - back up in a few hours I'm sure...more to report at a more reasonable hour tomorrow.

Mommy and Noah Day!

Tuesdays are my favorite day of the week.  I only work 4 days and Tuesdays I have the day off to spend with Noah.  Noah was back to his old self-finally done with that nasty cold he has been battling-and was in an exceptionally good mood.  He even took 2 long naps which is a rare occurrence so he was definitely a happy little boy!

It was rainy and cold here again today so we had a pretty lazy day.  Sandy did come again and Noah had a great PT session.  It makes it so much easier when he is laughing and smiling.  Sandy worked with him on using both of his hands, trying to get him up into the crawling position, and holding a toy with his right hand while lying on his left side.  She also showed me how to do some massage with Noah.  I was surprised at how much he enjoyed and how it how much it helped his arm.  After I had massaged his right arm/hand it was so relaxed and he was moving around and keeping his hand open.  Great to see and definitely something to add to the daily routine.  Here are a few pictures from our great day!

And so the streak continues!  I thought I would do a guest post tonight to give Brad a little break.  Need to warn you my writing is definitely not as good and I had no idea how difficult this is!

To keep the streak alive today I decided to change it up and rode my bike.  Brad was nice enough to set it up with the trainer last night so it was all ready to go.  It worked out perfectly because it rained here all day and wasn't a nice night for a run or walk.  As I was riding I was thinking to myself about the last time I had actually been on my bike.  I couldn't believe it was almost 2 years ago-right after I had done the Ironman.  It is crazy how much things have changed since then.

Noah was up very early this morning- 5 AM to be exact- and he was rearing to go.  Brad got up and did his exercises with him and then it was off to work/daycare.  Noah had a busy day at daycare playing with all his little friends and then physical therapy with Sandy this afternoon.  Currently he sees Sandy 2 days a week for physical therapy.  She has been working a lot with him on increasing his awareness of his right side and he seems to be noticing it more and more each day.  Yesterday as I was putting him to bed he was just holding his right hand out in front of him and staring at it.  He would move it slightly and then grab it with his left hand to check it out.  He even reached for my shirt a few times which made me smile.  I love watching him discover new things and always wonder what is going through his little head with each new discovery. These moments remind me that although he has had a stroke he is still a little boy who needs time to explore the world around him and we need to give him time to "let him be."

Since getting Noah's diagnosis 6 weeks ago I think it has been hard to not always try and encourage him to use his right side.  I find myself constantly putting toys in his right hand and helping him reach for things with his right arm.  I have dove in to trying to schedule all of his PT and OT appointments and find time for his daily stretches and exercises with us.  I have made it my mission to make sure he gets the services he needs and as much help as he can.  It is important-don't get me wrong- that we do these things for him but there also needs to be balance.  It's hard because when you find out your child has had a stroke you feel so helpless and want to cling to anything you can have control over.  I guess that's what I have started to do and I need to remind myself every now and then to take a step back.  Noah needs time to just be Noah and I need to make sure he gets it.  Looking forward to tomorrow and Mommy and Noah day!

May 15, 2011 - Halfway Through the Streak

Here we are - halfway through the month of May. We've each kept up our streaks and I can safely say that there is no way we would ever let them lapse. Today, we actually took a family run - at least until I almost passed out and had to head back home with Noah while Susan continued on a ways.

We also headed down to see our good friends Pete, Jen and their 3 kids (and another on the way)! It was really good to see them - had been too long. Noah had a whole host of new toys to play with at their house - but he didn't seem to want to use his right arm at all. Just as we had been so excited last night - today was somewhat upsetting in that regard. How quickly things can change. However, he was his usual happy, smiley self and we enjoyed the afternoon. That said - just when you think progress is being made - you realize this is going to be a long, hard battle and we're nowhere near being halfway to anywhere.

Happy official birthday to Noah's Aunt Elise...

May 14, 2011 - Nails

The streak lives, though my knee started hurting towards the end of my run this evening.  Was another beautiful evening here; in the 60's, partly cloudy (rain is rolling in now) and, dare I say, a nice night for a run?  If you read down to the earlier posts on this blog - you'll see me make reference to the runs getting a bit easier.  Well, I haven't said anything about that it quite sometime as it is no longer true - I've hit a plateau - the run is not getting any easier...probably could use a day to let my muscles that haven't been used in so long regroup, but that's not going to happen for another couple of weeks.  On a somewhat related note, I jammed my finger tonight and bent back my finger nail - really hurt!  I mention these things as a way of admitting that I am really not a very tough guy...

Speaking of nails - remember Lenny Dyksrtra - aka "Nails" - of the New York Mets and, later, the Philadelphia Phillies?  His off-the-field life was and continues to be quite a disaster (he's been retired for quite sometime now), but the toughness he displayed on the baseball field (perhaps arguably) earned him this nickname.  Why do I mention this?  Susan, Noah and I are in the midst of a car shopping endeavor to top all car shopping efforts...we have been actively looking for months, heading out just about every weekend to test drive or talk to sales guys.  We have an idea of the car we want, but I have a price in mind and I'm one of these people who will keep negotiating with dealerships and going to different dealerships until I get the numbers I want.  I hate the process - who doesn't - but some part of me does enjoy haggling with car salesman....I guess I just like to turn the tables on the stereotypical carsalesman whenever possible on behalf of the rest of society.  Anyways, since we aren't going to install Noah's carseat in each and every vehicle we test drive, Susan and I have been taking turns test driving while the other watches Noah.  Today, while Susan was test driving a Chevy Traverse (not going to be "the one"), Noah and I were hanging out drooling on the salesman's desk (I won't say which one of us was drooling).  We had a couple of toys for Noah to play with and I put a plastic chain of rings around Noah's right wrist.  He normally loves to shake these as there are three rings hooked together and they make great noise when he does - but it's always with his left hand.  Today, while hooked around his right wrist, he started shaking the rings around!  I was soooo excited and cheered him on....he got more excited as I cheered and kept shaking them more and more!  It was fantastic and it got me thinking about how tough this little kid is.  Noah suffered a sizeable stroke in utero and survived....today he is 7 1/2 months old and, through sheer will and grit, he is able to move his right arm/hand/leg a little bit.  We've continued to be optimistic about his longer term prognosis, but shorter-term our hopes have certainly been tempered.  At this young age, it's very hard for him, his movement is uncoordinated and limited and he has good days and bad days.  But, he is moving it a bit.  I don't want to get too excited about this as this will likely be a life-long effort for Noah, but sometimes it's hard not too.  This little boy has no idea what he has been through, nor does he care.  And I couldn't be more proud of him.

In life I think we all have the one person (or perhaps more than one) who make us feel almost invincable...that person who makes you feel like you can do anything when you're around them.  Noah is now that person in my life....little "Nails".          

May 13, 2011 - Aunt Elise's Birthday Dinner

Noah's grandfather took the whole family (ex Noah ironically enough) to dinner for Noah's Aunt Elise's birthday.  Her actually birthday is Sunday, but we did the family celebration tonight.  We had a great time - was actually very good for Susan and I to get out of the house given everything that has gone on recently.  For us, on par with Elise having a birthday and my Dad picking up the bill for everyone was Elise's best-friend Rachel who came over to babysit for us by way of a last minute request.  We couldn't thank her enough for just coming and then - to boot - she refused to accept any payment.  Of course, Noah decided tonight would be the night to wake up in the late evening - before we got home - so poor Rachel sat and rocked him for almost an hour and he wouldn't go back to sleep.  Rachel, you are too sweet and when you least expect it, we will find a way to repay you.

Proud to say that all streaks are still in tact.  Susan and Noah walked down and met me at the train.  I got my run in after Noah went to bed and before we left for dinner.

For me, it was really good to see the whole family tonight.  This was the first time I've noticed a totally natural conversation flow since we received Noah's diagnosis 6 weeks ago today and it was good.  I didn't feel like we had to put on a good face, were able to freely talk about the latest with Noah, but as a group we didn't dwell on it either.  It was just nice....and normal.  You can easily forget how good normal can feel - if only for a couple of hours.

May 12th 2011 Streaking with Pictures

So, the posting function for the blogger is down, so we are keeping the streak by typing this up in Word and will post as soon as the functionality is restored.

Tonight we wanted to simply provide an updated photo or two of Noah since the one above is 2 months old now.  It’s amazing how big he’s gotten – looks like a little man almost! 

Ps – he seems to be feeling better today – hopefully he sleeps through the night!

Here he is with his adoring grandfather.

Here he is unsure as to whether or not he likes the Bob.

 

May 11, 2011 - Running Alone

Tough night for us - after much deliberation, we made the very difficult decision to give Baxter the Dog to another family.  We are saddened to have to part with our Baxter - we've had him since he was a little 7-week old puppy until today, just over 2 years old.  We dropped him off this evening.  The house seems empty and quiet.  We know that it is the right decision for us and for Baxter, but it doesn't make it much easier tonight...I'm sure for a little while.  All of our focus needs to be on Noah and his therapy and it was just getting to be unfair to Baxter as we weren't able to give him the attention he needs and deserves.

Baxter's new family is absolutely wonderful and we couldn't have asked for a better situation for him.  They love does, have a big fenced in yard and have the kind of activity in their house that Baxter will love. Susan used to work with M and knew that she, her husband and 3 kids would dog sit quite often.  Susan reached out when we decided to look into finding Baxter a new home to see if M might know anyone looking for a dog, and wouldn't you know it, they actually had been since Christmas.  So, we brought Baxter for a brief visit a couple weeks ago and then for a play date this past Sunday.  It turns out that Baxter is a spitting image of their old dog.  We agreed that evening that Baxter would move in tonight.  They live in town - not far away - and hopefully we can see Baxter every once in a while (though we need to be especially careful at the beginning so we don't further confuse the poor guy further). 

Tonight was the first night that I streaked by myself - Baxter the Dog had been with me each time.  The run was a little easier without his propensity for getting distracted by whatever wildlife we ran past, but it was also a little lonely.  Not unlike the feelings Susan and I have had from time-to-time since learning of Noah's diagnosis.  Our family and friends - even people we would consider acquaintances - are there for us and have surprised us with how thoughtful and generous those in our life can be.  However, it's impossible for most to truly understand what we're going through as we try to find our way.  As such, we have felt like we've been running alone from time-to-time.  Again - we know we're not, but it's hard not to feel that way sometimes.  Will this feeling ever change?  Will it get easier?  Will we ever get our normal lives back?  Only time will tell, but tonight I'm just not sure...  

May 10, 2011 - Streaking Through the Rain Again

The running streak is in tact - Baxter the Dog and I jogged through the rain on our usual course.  Actually, for Baxter, it's really more of a trot.  We ran through a light drizzle tonight that was otherwise uneventful.  I will say that, not having run for quite some time until starting this streak, the every day grind is taking its toll on my legs a bit...my ankle is a little stiff, my foot hurts a bit and my legs are somewhat sore.  But, I'm certainly not going to complain anymore than that.  Noah is doing his exercises everyday and it's not easy for - I can certainly do the same for a month. 

Noah was home with Susan today - he was still very fussy with his cough and stuffy nose, but he had a good day with his hand again today.  He apparently went to "answer" her cell phone with his right hand today - though in a very uncoordinated manner.  Kids are really starting early with cell phones these days, huh?

I wanted to post a couple of links that we have found helpful - just some additional information about pediatric stroke:

http://www.strokeassociation.org/STROKEORG/AboutStroke/StrokeInChildren/Stroke-In-Children_UCM_308543_SubHomePage.jsp

http://www.chasa.org/

Forty days of rain since we found out our little Noah had suffered an in utero stroke.  Fortunately, he is tougher than his old man - not only surviving, but now getting stronger each and every day.  We get angry, upset, sad, mad and overwhelmed.  We also are happy, excited, grateful and lucky.  Thank you again to those of you have reached  to us- it means the world to us.  We are always happy to talk about Noah and answer any questions you may have...if your child is in the same situation or if you are just curious to know more.        

May 9, 2011 - Running Streaks

Celts just lost game 4...they'll need a little streak of their own now.  Noah has started his ownrunning streak - his nose.  He is covering his face and clothes with boogies everyday - it's been going for 4 days now.  Actually, poor little guy, he's got a terrible cough to boot.  He's never fussy, but today I actually had to pick him up early from daycare he was such a mess and we took him to the pediatrician to get him checked out.  He's got a little something - not a full blown ear infection, but there's something there so we got an antibiotic.  Poor little guy was so tired, he passed out cold on the ride home and we had to put him straight to bed...we'll start the medicine tomorrow.

Baxter the Dog and I had a pretty good run tonight...a little later than usual, but I was sure to not wait until after dinner as that is a total disaster.  We ran our usual route...turned windy on the way back in to the house, but we powered through and "sprinted" up the hill around the corner to finish.  It was a good evening to run...and to think. 

About what?  Baseball actually...the greatest game invented.  A game with no clocks and that is all about the little things.  A pitch can be a fraction of an inch off the plate; a batter can be a fraction of a second late with his swing; a swing can be a fraction of an inch too high or too low; a fielder can be positioned a fraction of an inch too far in one direction or another.  All of these little things have to line up for you - it's the difference between winning and losing.  I won't bore you with going into the obvious analogy here that I was thinking about on my run - but I think you get the point.  Life for us seems overwhelming right now and we are working to get all of the little things going in the right direction while still clutching to any semblence of normalcy that we can.  And I feel like we are doing the right things for Noah - helping him with those little things.  I have to believe that each one of these little things will eventually add up and someday I will play catch with my son.   

May 8, 2011 - Streaking for the Mom's

Happy Mother's Day.  We had a great day here...breakfast in bed for Susan (Noah was a huge help), cards and a gift (a day of pampering TBD), time in the late morning for her to go get a pedicure, a family walk to keep her streak going and then to my parents' house for dinner.  I got my run in with Noah and Baxter the Dog while Susan was getting her pedicure...perfect day for a run with high 50's and sunny.  Noah still doesn't seem to know what to think of the forward-facing "Bob", but he didn't complain and we finished strong shortly after Susan go home from her pedicure.  Dinner was great as we had many eager helpers (Noah is the first grandchild on both sides). 

It was a really nice day and I was glad to be able to show my appreciation and love for my wife on her first mother's day.  I mentioned earlier that I think Noah gets his stamina from her and I want to point out that without her persistence, I don't know where'd we be today.  She was the one who brought up the original concern with our pediatrician at our 2-month visit; insisted that we not ignore it any longer at our 4-month visit; and got us in to see the neurologist 3 weeks earlier than they originally told us the first available appointment was.  She is on top of our crazy schedule at all times, always puts in the extra set of exercises with Noah when neither really wants to, is his #1 advocate in everything we do, adores him unconditionally and still makes time for me.  She has run 9 marathons, multiple triathalons and even a full Iron Man up at Lake Placid two summers ago.  A few Christmas's ago she came home in tears with two shopping bags full of toys - she was upset that every kid might not get a toy to open on Christmas morning.  She is the toughest, most resilient, compassionate and caring person I know and I'm proud, happy, lucky to have her as my wife and Noah is the luckiest little boy in the world to have her as his mother.  Together, I know the three of us can do and get through anything - pediatric stroke included.

May 7, 2011 - Streaking Through the Common

Busy, busy Saturday.  But, did have time to take Baxter the Dog for another run.  It was a little wet out there and I was a bit weighed down, but we made it through - another "sprint" across the finish line in honor of Animal Kingdom's big come-from-behind victory in the Derby.  Baxter was absolutely raring to go as we had been all over the place today and he didn't get as much exercise as he normally likes.

Was weighed down for the run as our great friends Dave and Rachel brought their daughter Lucy over this afternoon and then we went to an early dinner.  Pizza and a couple of beers is not the pre-race meal of champions, but it was delicious and great to see them all.  Noah had an absolutely fantastic time, though ended up being awake well past his bedtime.  He absolutely adores Lucy....young love!

The other big event of the day was a picnic on Boston Common with the families of pediatric stroke survivors.  Susan and I had mixed emotions about going...a little hesitant to leave our "bubble".  We told ourselves that we would leave if it became uncomfortable.  In fact, we got to the meeting spot and almost left.  But, we didn't and we are really happy we didn't.  There were probably eight families there with children ranging in age from Noah (I believe the youngest) to Olivia who was 12.  It was so great to meet the parents and children and to be able to just freely talk about the challenges and joys of our common situation.  Such a wonderful group of people - each one willing to embrace you as "family" within minutes of meeting you.  It was really nice to see so many of the children doing so well - walking, running, playing...being kids.  Noah was his usual self and had almost the entire crowd standing around our picnic blanket by the time we were ready to go...sitting, playing, smiling at everyone and making eyes at all of the little girls in the group.  We thought we'd be there for 45 minutes or an hour tops...we discussed having a secret signal when one of us was ready to go.  Over two hours later, the only reason we left was thunder and lightning. 

Didn't make it to Home Depot or Bed, Bath and Beyond, but all in all, it was a pretty nice little Saturday.     

May 6, 2011 - 10 Furlongs

Day 6 of the streak and I decided to extend tonight's run by just a little bit.  The original route was about a mile and Baxter the Dog and I had worked into a pretty nice grove.  I honestly have not run with regularity since high school - and so I have literally been trying not to kill myself with this streak.  However, tonight, a beautiful Friday, ripe for grilling and Samuel Adams Summer Brew, seemed appropriate for an extension to the course - by just a little bit.  So, as Baxter and I turned the third corner of our run, I decided to push on a bit further,  adding perhaps 1/4 of a mile or so to the run and bringing the total to about 1 1/4.  For those who have their mint julip syrup in the fridge as I write this, you will recognize this distance as being equal to 10 furlongs - or the distance of tomorrow's Kentucky Derby.  I'm not going to lie, this slight addition to the course did not go unnoticed.  However, once again proud to report that we just kept going and finished the run with a sprint....and down the stretch they come!

Noah had another good day today.  Susan picked him up a little after 5 as is usual for Friday.  She took him with her to Whole Foods to grab some food for dinner as we had our dear friends Matt and Megan over this evening.  While picking out some delicious kabobs that were on sale, Susan saw Noah quickly, but distinctly "grab" for one of the toys hooked into his carseat.  He often bats at this toy with his right hand - like a cat playing with an uninteresting ball of yarn - and it brings a smile to our faces.  But tonight, he made a distinct grab for it - just briefly.  Another monumental effort from my hero...he truly amazes me with almost daily occurence - way to go buddy! 

Having Matt and Megan over this evening - grilling on a beautiful spring evening - got me thinking about traditions as this is one of my favorites.  What traditions have meant the most in your life and what do you want to pass onto your children.  Things your parents did with you growing up?  Things you've done with friends?  Things you've just decided to do on your own?  A few for me: cooking out and playing golf on Memorial Day weekend, heading to Cape Cod for July 4th, a week's vacation in August, hosting Candian Thanksgiving with friends, playing cards into the wee hours of the night over Christmas with family...these are some of the most special times each year for me and I like to think that Susan and I will create more of these for Noah and he, in turn, will create some himself.  Time will tell.  He seems so curious and interested in just about everything these days.  It truly is fun to watch his little mind at work as he figures things out each and every day and decides what he likes and what he doesn't.  Our job, I think, is to keep presenting him with new things to consider...continually add that extra 1/4 mile to the mile he already knows and help to create memories he will hopefully cherish...things he'll come to know and remember as his "greatest two minutes in sports".  Enjoy the Derby.

May 5, 2011 - Streaking with Five Guys

The Old School, "We're Going Streaking" quotes officially end tonight...it was a nice streak while it lasted.  On to today's title...

In case it's not intuitive, streaking with Five Guys through the night with your dog tagging along is a terrible idea.  I guess that requires further explanation.  My usual run time is right around 7pm as Susan puts Noah to sleep and before we eat dinner. I had a setback in tonight's schedule though, as Baxter the Dog was out of food and we had nothing in the house to eat ourselves.  So, rather than going for a run at the usual time, I went out to get Baxter and us something to eat.  On the drive to Petco, it became apparent that there wasn't much gas in the tank - so I pulled in to fill up and the Five Guys Burgers across the street seemed like a good idea...at the time.  Five Guys is delicious in moderation, but terrible right before you go for a run.  Proud to report that Baxter and I plowed through the run again tonight, though we didn't break any land-speed records and I'm still waiting for the cramp in my side to loosen up.  I'm in pain, but I'm feeling good.  As soon as I walked into the house, Susan took the leash from my hands and took Baxter for a walk.  Both streaks remain healthily in tact. 

A very exciting report from Noah tonight.  I came home, kissed Noah and Susan hello and then ran upstairs to change out of my suit and into my "play" clothes (we always used to call them my Dad's play clothes when he did the same routine, I'll try to carry on that tradition).  When I came down, Susan had Noah in his high chair and ready to eat dinner (peas mixed with rice tonight - sounds yummy).  Sitting there in his chair, he voluntarily raised his right fist (the weak side) and put it in his mouth!  Susan and I were so excited and started clapping and cheering "Yeah Noah!"....well, he loves it when you do this.  So, he was getting more excited and I decided to threw my arms up in the air, doing a modified "wave" while still cheering "Yeah Noah!".  He has been starting to imitate us more and more these days, and wouldn't you know it, he put both arms up above his head.  Well, his right arm was about even with his head, but close enough.  While this doesn't sound like much, to us it was monumental...I had to hold back a few tears as I kept throwing my arms up and he kept imitating!  After a minute or so, I had to scoop him up and hold him close...he truly is an amazing little boy. 

These days the world turns a little slower for me, the days are a little longer, I notice things that I haven't in the past and the little things are now the big things.  Things with Noah are going to be hard for all of us, but I feel myself changing - and I like to think it's for the better.  I mean, 7 months ago, I would have never dreamed of going streaking at night with Baxter the Dog and Five Guys...

May 4, 2011 - Into the Gymnasium

Day 4 of the streak.  Proud to keep the Old School, Will Ferrell, "Going Streaking" quotes going!  Baxter the Dog and I once again took to the pavement around 7pm through a light drizzle.  I very intelligently wore black shorts and a black wind shirt to go with my black dog on a run on a cloudy, drizzly evening in May.  My neighbor saw me as we turned the corner coming home and just shook his head at my stupidity.  I can hear myself talking to Noah in a couple of years, giving him the proverbial, "Do what I say, not what I do," speech....hopefully I possess the character to not have to.  Ignoring the poor choice in clothing this evening, the run went well and, dare I say, got a tiny bit easier again tonight after last night's setback.  Baxter seemed to be back at full speed too.  I don't want to give the wrong idea, but running through the light rain was actually somewhat peaceful and I didn't hate it.  A nice time to just think. 

What did I think about?  The Fitness Challenge we all had to do as kids in gym class, of course.  Remember?  Sit 'n Reach, Pull-Ups, Sit-Ups and the Mile Run.  I have quickly learned that my mile run is not quite at the level it was in high school...sadly, not at the level it was in grade school either.  My buddies at work and I have talked about this sporadically over the past few years - how would we do if we were to compete in the Fitness Challenge in our current physical state?  We actually talked about giving ourselves one month to train and then putting ourselves through the challenge together.  Never happened, but entertaining to consider.  So, the mile run that I have started my streak with got me thinking about this and - oddly enough as I plodded through the rain - how I would do today versus Noah in the Fitness Challenge.  Here's my quick breakdown of the four events:

1. Sit 'n Reach -  Noah would absolutely crush me, not even close.  He, like all babies, is incredibly flexible -  and I mean incredible in its purest definition.  Noah 1-0-0, Dad 0-1-0 (watching the Bruins has inspired me to include the ties).

2.  Pull-Ups - draw.  We would both do 0.  Noah has a good excuse, he's a pudgy little baby yet to develop upper-body strength.  I have no excuse.  Noah 1-0-1, Dad 0-1-1.

3. Sit-Ups - I have to go with Noah again here.  He works his abs all day long - trying to sit up at pretty much every opportunity he gets.  Pretty sure he has a baby six pack under all that flab.  He can't quite go from lying on his back to sitting yet, but I think in a sit-up competition he would be tough to beat.  Noah 2-0-1, Dad 0-1-1.

4. The Mile Run - draw on a technicality.  Obviously, at 7 months old, Noah cannot stand-up on his own, let alone run.  So, were we to do the mile run together, he'd be in "The Bob" (as previously mentioned here, a great piece of machinery) and I'd be pushing.  So, I would try to maneuver to win at the finish line, but realistically, I'm only going to be able to get even with the stroller in a best-case-scenario.  I can be cagey when needed, so I'll give myself the tie.  Final score: Noah 2-0-2, Dad 0-2-2.

I must admit, I have often thought about how Noah will do when he really goes "into the gymnasium".  I have played a variety of sports my entire life and was (and I stress "was") a pretty good athlete growing up.  Some of my fondest childhood memories are of our family at the park together - my Dad pitching to me until it was dark or hitting me fly-balls until I was dizzy.  As the weather gets warmer and the Red Sox season heats up, I can't help but hope to be able to do the same with Noah someday.  In the grand scheme of things, I realize it doesn't matter, but sports have been and continue to be a big part of my life and I want to be able share that with him.  What will it take for that to happen?  There is no way to know at this point.  But, as long as he is up for it - and I think he will be - I will be at his side, working hard each and every day, and streaking right into that gymnasium.

May 3, 2011 - Through the Quad

Day 3 of the streak - it was a tough run his evening....Baxter the Dog struggled too.  But, I'm proud to say, we got the run in and I feel good about it.  Baxter is now fast asleep on the couch next to me...I'm quickly fading.  Noah had a great day - Tuesdays are at home with Mommy and he loves it...I usually get jealous that Susan gets to spend the whole day with my hero, Noah Walker.  Noah had Sandy the physical therapist from Early Intervention over today - she works with him at the house for an hour every Tuesday.  We think he has realized that she makes him do things he doesn't want to do - he gets a look on his face when she walks through the door that tells us he knows exactly whats going on and that he doesn't necessarily like it.  But, as always, he rebounds quickly and is all smiles at the end of his session. 

As I'm quickly running out of usable Old School quotes about "Going streaking!" - I thought I'd use this one - Through the Quad - to share a few things. 

Four things we know:
1. Noah had a stroke that was caused by a blood clot that blocked an artery, cutting off the oxygen supply to a portion of the left side of his brain.  This particularly section controls motor skills on the right side of the body and is also responsible for speech.
2. There was nothing anyone could have done that would have changed this - it was truly a case of bad luck - it occurs in 1 in 4,000 births.  A clot the size of a grain of sand likely made its way from the placenta, through the umbilical cord, pressed on through his heart and took a wrong turn into his brain.
3. Noah has gone through extensive tests at Children's Hospital and we are relieved to be able to say that he is in otherwise perfect health.  His heart is perfect, as is his blood (two potential causes of the stroke that have been ruled out).  So, he is at no greater risk than you or I to have another stroke later in life.  The damage that was done is just that - done...it is not progressive and we can move forward, working to get him better.
4. He is an unbelievable little boy with the happiest demeanor I've ever seen, a smile that is almost always present and will melt your heart, the determination of his mother and the kind of personality - even at just 7 months of age - that you want to be around.

Four things we don't know:
1. Exactly why this happened...we seemingly never will.  As I mentioned, it was a fluke, but we won't know exactly what caused the clot.  In this case - it is better not to know as the alternative would likely mean worse things.
2. How this will impact Noah long term.  The range of results for children with pediatric stroke is very wide.  It will always be with him.  He will likely be delayed with his speech and may always have some trouble expressing his thoughts.  He will likely be delayed walking and, when he does start (I don't like to say "if") he will likely need a brace and he may ultimately walk with an uneven stride.  He will likely have a significant delay with his fine motor skills with his right hand and may have trouble there long term too.  But, bottom line, we don't know.
3. How we are going to deal with this...right now the situation is quite overwhelming.  Some days we want people to tell us everything is going to be okay; others we want people to offer quiet words of sympathy.  Fortunately, we have a great group of friends, family, doctors and other professionals to help us every step of the way.
4. What the best course of action is.  There is no road map for this.  We read a lot, we talk to as many people as possible and we try to focus every possible minute of every day on helping Noah to get better.  There is no right answer - all we can do is take each day as it comes and change our route if and when we need to.  For now, we're going streaking through the quad...and then into the gymnasium.

May 2, 2011 - "Bring Your Green Hat"

Day 2 of the streak - not sure I can keep the "Old School" quotes going, but I'll try!  I'm on pick-up from daycare on Monday's...picked Noah up at Wendy's Daycare about 5:20 (we absolutely love Wendy and the team) .  As is usual, when I walked in, Noah was surrounded by the women at his home away from home, basking in their attention.  Wendy and Donna (caregivers), Madeline and Viviana (his girlfriends), all sitting in a circle around Noah (smiling ear-to-ear).  He has a great time there - in fact, he probably gets a little bored when it's just Mommy and Daddy at home on the weekends.

This evening I took Baxter the Dog and Noah for my run as Susan was working a little late, it was beautiful outside and Noah was in a great mood.  He usually starts to turn into a pumpkin around 6 - he goes to sleep by 7 - but tonight was different...Noah was raring to go.  It was also my inaugural run with "The Bob"...that thing is fantastic - once it got going, I just ran behind it and it took care of the rest.  Not surprisingly, my feelings about running in general did not change overnight - though I'll admit it did seem a tiny bit easier tonight than last.  Noah still doesn't quite know what to do with himself when in a forward-facing stroller, but we'll take his ambivalence as a quiet sign of approval.

He had a good evening with his right arm too...he was moving it up and down while eating dinner tonight (sweet potatoes and oatmeal if you must know).  He continues to be a trooper with stretching and strength building exercise...up at 5:30 this morning and then more before dinner...they work with him at the daycare too - encouraging him to use his right arm whenever possible.  As a father, I want so badly for him to be able to do all of the things that he wants to do...that I was able to do...nothing should hold him back.  I know it is going to be a long, slow process.  Noah's run will not be a sprint...it will be a marathon or, perhaps an IronMan (which his Mom knows all about).  But, when given the choice, I prefer to be an optimist and I like to think that - in a small, tiny way like my running - each and everyday it can get a little easier for him.  If we just help him get a little better each and everyday, I like to think that he'll be able to do whatever he wants to do in this world...walk, run, play baseball, dance at his wedding...at his childrens' weddings.  He can even bring his green hat...

May 1, 2011 - We're Going Streaking!

One of Will Ferrell's finest moments...

Made it through the first day of "the streak"...went for a run this evening with Baxter the dog (fully clothed).  This was my first time running with Baxter and I am no where near fast enough to keep up with him.  I was also reminded how much I dislike running.  We all went for a nice long walk earlier in the day so Susan's streak is off and walking too.  James Joyce Ramble was going on in town today - a 10k in honor of the late author - and we wanted to check it out.  The race draws over 2,000 runners, some professionals, and gets written up in places like Runner's World and The Times.  Had no idea what a big event it was...the lawn at the Endicott Estate was packed and people of all ages were out enjoying the absolutely perfect day. 

Posted this blog to Facebook last night before we went to bed...felt kind of strange as it was a coming out of sorts.  Had tried to personally speak with as many friends and family members as possible to let them know what is going on with Noah, but it truly got to the point of being exhausting.  For those of you finding out about Noah's stroke via Facebook or right here, I apologize I wasn't able to tell you personally.  It's not that I don't want to talk about it...it's actually quite therapeutic to do so and I welcome your questions.  I just sort of ran out of steam and it had been a month since his diagnosis...just didn't want to dance around our reality anymore. 

Noah had a great day other than he was up at 4:30 this morning. Susan got him back to sleep for a bit, but he was up for good at 5:30.  We had a little guy time so Susan could sleep a little longer.  He went bonkers in his jumper for a good 20 minutes in the living room which allowed me to make some much needed coffee.  Speaking of which, his right leg seems to be doing pretty well.  He is putting some weight on it when we hold him up to stand and he seems to be pushing off with it quite a bit.  He also made an effort to reach for his pacifier with his right hand this afternoon....brought big smiles to mommy's and daddy's faces.  Life can certainly change in an instant...it's all about the little things now.