Another Streak Completed!

Quick post tonight - more tomorrow with some thoughts on the whole thing. Tonight, we are celebrating! Celebrating our friends', family's and colleagues' generosity...celebrating Susan and my efforts...and, most importantly, celebrating our amazing little boy Noah! He really is a special kid, meant to do something important in his life...we know that he'll be up for whatever it is!

Fundraising for the Streak!

I'm proud to be able to report that, as of today, we hit an even $3,000 in fundraising for the CHASA organization.  Much to my surprise, a colleague walked into my office this afternoon and handed me a check for $250 made out to the charity!  I couldn't have been happier to surpass our goal by an even $1,000 - and we'll have some more filtering to the charity with corporate matching contributions in the weeks to come!  It's not too late if you'd like to give:

http://www.firstgiving.com/fundraiser/susangodfrey/streak-for-pediatric-stroke

We can't thank our friends, family and co-workers enough...it really means the world to us that so many would take an interest in and support what we are trying to do. 

Our fundraising success, coupled with Noah's recent developments, has really made this month a fantastic one for us....and it is in such sharp contrast to last May, for sure.  What a difference a year makes!  Tomorrow will be the last day of pediatric stroke awareness month for 2012 and our streaks will officially come to an end.  However, we will certainly remain committed to helping families similar to ours that are either less fortunate than us, or new to the situation and in need of support and information. 

  

Climbing Stairs

Day two after the marathon and the stiffness has really set in.  I think that the second day is always the worst and things seem to get better from there.  The annoying part of feeling so sore is that it impacts how I walk up and down stairs.  In the past this has not been problem but now that I have to carry a 30 lb not so little man up and down stairs it has created a little bit of an issue.  I realized it this morning as I scooped Noah up and tried to side step down our narrow staircase with him in my arms.  It was a little hairy but we made it down without either of us falling.  To my surprise Noah was not the least bit scared (I was petrified) but thought it was totally hilarious!  He laughed hysterically all the way down the stairs and this continued throughout the day.  Walking down the stairs outside he was laughing so hard I thought he was going to hurl himself out of my arms.  Glad to know he is concerned about his Mommy!

With getting down the stairs being an ordeal I decided that I would make Noah crawl up the stairs if we had to go back up.  I had actually tried this with him last night and was amazed at how well he did.  The best part about seeing him doing this was how much he used his right arm.  With all of his walking and talking we have kind of being slacking when it comes to fine motor skills and constraint therapy for his right arm.  He still has being going to OT twice a week during which he gets pushed very hard (love his OT!) but as I had mentioned in an earlier post the constraint therapy has not been consistent.  It's always hard to find a balance with everything and right now Brad and I have decided to let Noah just be a kid and enjoy this fun phase.  We are still doing constraint therapy when we can but trying not to beat ourselves up about it if it doesn't get done.  Anyway watching him crawl up the stairs I was in awe at how coordinated he was and how he would actually bring his right arm up to the step above him to help pull himself up.  It was really exciting to see and definitely easier for me than carrying him!!

Noah was home again with me today and we had our usual daily routine.  Had fun at group class as he ran around acting like a goof.  He was in such a silly mood today-not sure what had gotten into him.  My favorite part of class was when he decided to gather all the dolls in the room, put them in a pile, and then "body-slammed" them.  He actually did this again this afternoon with Elmo and puppy-I guess we may have a professional wrestler on our hands.  After his nap he was in a happy mood so decided to a little constraint therapy.  We made it through an hour and 15 minutes and he tolerated it pretty well.  He got kind of bored by the end and I'm thinking I may need to change up some of the toys in the rotation.  One exciting part of therapy was that for the first time I saw him pick up his pacifier with his right hand and he managed to get it into his mouth!  It was by no means pretty but I was so proud.  It's crazy what will actually motivate him.

We ended the day by heading out to the park and then walking down to the train to meet Brad.  Noah had a great time at the park and was running all over the place.  He was still being pretty silly and at one point started what I can only describe as heckling the little leaguers that were in the park playing baseball.  The little boys couldn't have been older than 5 or 6 and their coach was teaching them how to run the bases.  They were standing in line and one by one would each run all the way around the bases.  Noah ran up behind the fence behind home plate (the hand holding stage is officially over), started waving his left hand in the air, and screaming out his usual gibberish at the top of his lungs.  In between the gibberish I could make out a few "gos" as he crazily continued yelling.  It was pretty funny and he did get a few smiles from some of the other parents.  We made our way down to the train to scoop up Brad and then home for dinner and bed.  With the walk I was able to keep my streak going and all and all had a good day.  Hard to believe there are only 2 days left!

Marathon Recap

Today was Memorial Day and I was happy to not have to get up and go to work. I was definitely pretty sore and exhausted from the race yesterday but still feeling good about the experience. As promised I will give a little recap of the marathon yesterday. As usual we were running late on Sunday morning (the story of our lives) and I ended up getting to the marathon about 15 minutes before the start. This was after a 1/2 mile frantic walk/jog to the start as all of the roads close to the race were closed. I of course didn't know where I was going and was a little frazzled by the time I made it down to the start. The nerves quickly disappeared as I waited in line and made my way out for the 26.2 mile trek. The first 17 miles went great. I settled into a great pace and was happy to be running around 9:20 min/miles. I knew in the back of my head there was no way I would be able to continue that pace but I decided to go with it and see how long I could make it last. The course was beautiful and all the runners were so friendly. I was just happy to be out on such a great day and was really enjoying myself. At mile 14.5 I decided I should stop for a quick bathroom break. I had had to go since the start and told myself once I made it half way I could stop. I really hate stopping in these races as it always throws me off a little. Today was unfortunately no different! Once I started running again I stiffened up and quickly found my pace slowing. Luckily as I turned the corner right before mile 15 I heard Brad cheering me on. I did not expect to see him at this point in the race so it was very exciting. Brad was holding Noah and he looked so cute in his polo shirt and red sox hat. I ran over to them and Noah just started laughing. I gave him a bunch of kisses which he thought was hilarious and he started laughing even more. It was so cute. I said goodbye and continued on my way (apparently after I started running Brad put Noah down and he started running after me-we may have another runner in the family!) With my new found motivation I picked up the pace and got back on track. I was good for another 2 miles and then I really started to slow down. At this point it was starting to get hot out and I was starting to feel it. I really didn't train that much for this marathon as I have for others so wasn't surprised that I started to have trouble. I told myself to just keep running until mile 20 and if I had to at that point I would walk. Once I made it to mile 20 the 4:30 pacer group came up behind me and I decided to try and run with them for a couple of miles. This couldn't have happened at a better time! It was good to get into a group and pick up my pace. It helped me stretch out my legs and gave me a little more motivation to make it to the finish. I kept up with them for about 2 miles and then settled into a slow walk/jog. It was at this point that I was totally exhausted and really wanted to be done. Thoughts of Noah kept me going and I continued to just put one foot in front of the other. I thought about how lucky we are that Noah is doing so well and how grateful I am for my amazing family. It is crazy to think how far we have come in just a year and how we are now in such I good place. Before I knew it I was at mile 25 and ready for the home stretch. The finish was great as the last mile was lined with cheering fans and I was able to spot Brad and Noah and our friends again. I made a quick stop to give some more kisses and then headed to the finish. I happily crossed the finish line and was glad to be done! Overall it was a great experience and I am so happy that I was able to raise money for CHASA. Brad and Noah walked over to meet me at the finish and Noah gave me a quick smile before he passed out in the stroller.

Vermont City Marathon!

Today was the day of the big race and I'm happy to say I finished in one piece!  It was an absolutely beautiful day, great course, and wonderful spectators.  I ran a lot slower than anticipated but I finished and really had a great time.  Brad, Noah, and our friends who we were staying with all came out to support me and it was fun to see them along the course.  Noah especially as he was taken aback by me running out of the crowd to give some sweaty kisses!  To top it all off we have raised $2500 for CHASA which we are so excited about.  Thank you again to all who donated-we are very lucky and blessed to have such amazing family and friends.

We made it home this evening and Noah again decided not to nap so it was a bit of a long drive.  Luckily goofy Mommy was able to keep him entertained and I'm proud to say I only had to resort to Elmo videos for the last 30 minutes of the trip. Needless to say we are all exhausted and ready for bed.  I will write out all the details of the run tomorrow.  For now here are a few pics from after the race-Noah half asleep and me ready to collapse!

Ver - Mont

We're up in Vermont, vising our great friends B, S and E, and with the big marathon tomorrow for Susan.  A bit of a hectic day and, as usual, we got a late start.  It did, however, leave me with one of my favorite mental pictures as a father to date.  Earlier this morning, before leaving for Burlington, we went to get haircuts for Noah and I.  In a nearby shopping plaza, there is both a "Snip-its" and a "Supercuts".  The plan was for Susan to take Noah to Snip-its while I hit Supercuts.  Snip-its is good for two things: the ability to keep a baby/toddler entertained just long enough for a 3-minute haircut; and a terrible 3-minute haircut.  A few minutes after I arrived at Supercuts, after leaving Susan and Noah and Snip-its, the two of them walked into the Supercuts after being informed that the wait at Snip-its was nearly an hour.  On a whim, we asked if Supercuts could take a child of his age....much to our surprise, they said "no problem".  So, back to my favorite mental picture of all time, within 10 minutes, Noah and I were sitting in adjoining barber chairs, getting our hair-cuts together!  It was pretty cool - though he didn't really enjoy the experience to the same degree that I did.  Oh well, I'll always remember it.  And, they did a great job of cutting his hair - by far the best haircut he's had...funny what taking more than 3 minutes can do!  On the flip-side, I received one of the worst haircuts of my lifetime...as Susan said on the way out, "They did a nice job of accentuating your receding hair-line."  Ouch! 

The other part of our master plan to get to Vermont today was that we'd run errands in the morning and then time our drive (about 3 1/2 hours) with Noah's nap, and leave about noon.  Well, the errand part worked well, but Noah decided that he was not going to nap - the entire drive!  All-in-all, he wasn't a disaster in the car - he babbled happily for most of the drive, but he did whine a bit intermittently, and then really kicked it into high gear for the final 45 minutes or so.  Susan was forced to climb into the back seat and try to entertain him around Montpelier.  We were relieved to get to the Sheraton hotel in Burlington where the marathon race packets were available for pick-up by the runners.  Once inside the conference center, Noah took off like a shot through the expo - refusing to hold my hand and weaving in and out of all of the other people at the expose like an Indy car driver.  It was a bit surreal to have our toddler off and running through a crowd of people - he refused to hold my hand.  It was only 3 weeks ago that he learned to pull himself up.

Finally, we got to B, S and E's around 5 pm and Noah was able to fully unleash his pent-up aggression.  He had a wonderful time with E - about 6 months older than he is.  They had had a brief romance back in October, were initially shy upon being reunited this afternoon/evening, but within an hour were back to their old ways - in love again! 

Off to bed now, I'm sure we'll have plenty to report on Susan's run tomorrow - we're all very excited! 

Marathon Bound!

Well the week is finally over and the marathon is just 2 days away!  It has snuck up on me fast and I really can't believe it is almost here.  I'm actually really excited about it and am so touched by all of the donations we have received for CHASA.  As I've said before it means so much to all of us to know that we have so much love and support.  I'm sure thinking of that as well as the determination of our little Noah will keep me going all the way to the finish line!

As Brad had posted quickly last night-we were able to get out for the night and had a wonderful dinner with friends.  It is rare these days that we get to go out on our own without Noah so we took advantage of it.  Noah did well with Nanna and was even asking for her this morning.  So funny to bring him into bed this morning and hear him asking for her.  He had another good day at daycare but unfortunately no nap again today!  The poor kid was a crazed disaster tonight running all over the house and babbling a ton.  His teacher at daycare this morning told me that he has been running around the gym shouting "go."  Apparently he started doing it yesterday and got all the other kids to run after him as he kept shouting "go, go, go!"  Miss Pam said it was so fun to watch and she wished I could have seen it.  I can only imagine!  We finally got him settled down tonight, gave him a quick bath and off to bed.  Brad and I are hoping he gets a good night sleep so we are ready for the big trip tomorrow!

Mommy and Daddy Night Out

As the title indicates, Susan and I enjoyed the night out with friends. Noah got to spend the night with his Nana and, while we missed him, all reports are that Noah and Nana had a great time together, incident free. It's late, and I'm sure we'll have more to report tomorrow.

Nana and Face Plants

Noah's Nana (my mother) came over tonight...she has fearlessly agreed to pick Noah up from daycare tomorrow, feed him dinner and put him to bed, all by herself, so Susan and I can meet friends for dinner, including one of my best and oldest friends who in town for a few days from the west coast. It has been a few months since Noah's Nana has seen his ever-evolving bedtime routine, so it was great that she was able to come over tonight to get a preview of the whole process. Dinner, reading books to wind down from the day, upstairs to change and wash up, then bedtime book with pacifier and "giraffe" and into the crib...we've got a pretty consistent routine that works for us and him - I'm sure both Noah and Nana will have no problems tomorrow and we love it when Noah gets to spend time with her and the rest of the family. Susan and I are looking forward to the very rare night out...should be fun for all! Only other notable item today was a couple of face-plants by Noah just before bed...we could tell he was tired, but he kept walking all around the downstairs. He lost his footing in the hallway and landed flat on his face, screamed for about 5 minutes and went on about his business...only to rinse, wash, repeat a few minutes later. Just as his black eye had faded, looks like he'll have another battle wound or two to show off at daycare! As usual, he remained undetterred, continuing to get back on his feet and keep walking. As the bruises continue to mount, he continues to show his Mommy's determination...what a little trooper!

The Dentist

Our pediatrician has been on us for the last couple of visits to take Noah to the dentist. With everything going on, it certainly hasn't been a priority - and we also were unsure of the need to have him go this early. But, the pediatrician convinced us to take him and today was the day. So I left work early, caught the train home and took Noah over as the dutiful father. He had had a good nap, so I was hopeful he'd be in a good mood - which he was. However, he had had a long nap and apparently had a lot of pent up energy. We sat down in the waiting room and within 2 minutes, Noah wanted to get down and start moving. Meanwhile, I was trying to fill out the paperwork. Of course, as soon as Noah wriggled himself free from my arms, he was off like a shot through the dentist's office...I had to toss the clipboard on the guy sitting next to us and sprint after him. I scooped him up just before he walked into one of the exam rooms - he immediately started whining, but quickly turned on the charm when he realized he had an audience of ladies. I brought him back out to the waiting room and tried reading some of the magazines and books, but he wanted nothing to do with them...he just wanted down. He wriggled free again, but this time landed on his bum so he started butt-scooting. I chicken-scratched the remaining paperwork and ran after him again...thankfully, once I turned in the paperwork we were good to go in almost immediately. I had been wondering how this whole thing was going to work with such a young child. When we were called in to see the dentist, they informed me that I should sit in the chair and hold Noah in my lap. After a few minutes, he started to get wrestless and I tried entertaining him with the iPhone to no avail. Thankfully, the dentist came in shortly thereafter and literally did a two minute exam. Everything checked out well and, quite frankly, I felt a little stupid for bringing him. To add insult to injury, I'm pretty sure I haven't added Noah to our dental insurance yet and so I'm likely to get the full bill in the near future! Oh well - his teeth and gums look good and he's right on pace with getting his baby teeth - they'll see him again in 2 years. He got a new toothbrush and a toy out of the ordeal - he also charmed the staff on our way out saying and waving good-bye to everyone. All in all - not a terrible event...though, I still certainly question the need!

Toddler Proof II

Busy day today - nothing new there...but what was new was that we caught Noah playing in the toilet! Splashing around with his hand completely submerged! When Susan found him and told him no, he proceeded to pull the empty toilet paper roll off of the holder and took off for his room. We never found the empty roll. I guess he showed her. I also guess that The toilet-bowl lock we bought needs to be installed. No nap at daycare again - seems to be becoming a "thing"...we're terrified of him giving up his nap at home - it's a precious few hours everyday we're home with him during which we can get chores done around the house...who knows what would happen to this place if that were to stop. Actually, I have an idea...after dinner, but before bed this evening, Noah and I were playing and, given his lack of sleep today, he was pretty crazed, to say the least. He was walking around the house squealing, pushing a chair in the living room into a floor-lamp and then whacking the chair so the lamp moved, rolling around on the ground kicking his legs in the air, trying to crawl up the stairs, pulling every book out of its storage spot (and he has a lot of them) and deciding it was funny to pull up my shirt and smack my belly with an open hand! In a word; chaos.

Let's Talk

A lot of the blog has recently, and understandably, been devoted to Noah's progress recently with his walking.  He was all over the place today, yet again.  However, he is also progressing quite nicely with his speech.  The area of his brain impacted by the stroke is primarily involved with motor control on his right side and speech.  While he really isn't very far behind most kids his age, because of his diagnosis, he was able to start with a speech therapist a couple of weeks ago.  We figure that, if it's being offered, we should take advantage.  As mentioned, he seemed to be doing pretty well before the therapist, but these days, it seems like he is picking up a new  (or sound as you'll see!) just about everyday.  Take a watch:

Face Plant

The marathon is just a week away and today I did my last long run before the big race.  I headed out this morning with the plan of running 18-20 miles.  I had intended on doing this last Saturday but my run then ended up being a disaster and I only was able to do about 10 miles.  My training hasn't been too good leading up to this marathon and I was hoping today I would finally have a good run.  I have been bad about preparing for my long runs so last night I made sure to eat well and got to bed early.  This morning I felt really good-ate my oatmeal, had my Gatorade, and off I went with my iPod mini full of motivating songs.

It was a beautiful day here today and perfect for running.  I was able to get out of the house around 7:30 AM and the weather was perfect.   I ran my usual route and was pleasantly surprised at my 9:30 minute/mile pace.  I was cruising along and having a wonderful time.  Around 15 miles in I decided to head into the center of town to get my second water at CVS and make my way back home.  It was at this time that one of my favorite songs, "Lean Back," came blasting onto the iPod and I began to pick up my pace.  I must have been really into the song because the next thing I knew my foot got stuck in the sidewalk and I found myself awkwardly trying to prevent myself from face planting into the pavement.  Unfortunately I was unsuccessful and did a very ungraceful belly flop maneuver straight into the sidewalk.  It was a pretty bad fall-the kind where a complete stranger pulls over on a main road to ask if you are OK.  I was totally embarrassed and quickly rolled over and picked myself up to survey the damage.  My knee was bleeding, my shoulder was bruised, and my hand covered in blood.  Luckily my face and teeth were intact so it wasn't that bad.  I rolled up my pant leg as to not bleed all over my new purple pants and started to hobble my way to CVS to call Brad to come and pick me up.

We have been posting a lot about Noah and his new walking and the many new bumps and bruises he gets every day.  I laughed to myself as I thought about this and how his Mom was going to match him today!  I also thought about how Noah always gets himself back up after a spill and happily keeps on trying to walk.  He's a very determined little boy and I like to think he gets some of his will and determination from me.  At this point I had gotten to CVS, bought my water, and haggled with them to give me some paper towel (they clearly saw that I was bleeding and you would have thought that asking for a piece of paper towel was asking for gold!).  I took another look at my injuries and made a quick "nursing" judgement (sometimes being a nurse comes in handy) and decided that I should keep going.  I was not going to let a little fall prevent me from finishing what I had set out to do and if Noah could do it so could I!  So I made sure my pant leg was securely rolled up and I started my run back home. 

I definitely didn't ran very fast for those last 3 miles but I happily did them and ended up running my goal of 18 miles.  I was happy with myself for not stopping and spent those last miles thinking about Noah and how very proud of him I am.

Toddler-Proof

Noah continues to improve with his walking skills and, now, really has no trouble at all getting himself up and going.  However, he does continue to have trouble once he's actually going - i.e. he walks like a drunken sailor at this point.  We are incredibly excited to have Noah walking and we still are taken off-guard oftentimes when he comes walking around the corner.  However, it also makes us a bit nervous.  He currently has a black eye and scrapes on the side of his left knee, not to mention bruises all over, from various falls this week.  He still hasn't quite figured out how to gracefully sit down from a standing position - oftening flopping hard to the floor.  He also often leans towards an object as he is approaching it to grab hold for support, but also often he starts reaching when he is still a little ways away, gets out over his toes and face plants into whatever he was reaching for.  The poor kid is getting the crap beat out of him!  But, to his credit, he just keeps on getting back up.  We baby-proofed the house quite a while ago when he began butt-scooting.  However, with all of this walking around, he's at a whole new level of getting into trouble - literally.  I'm sure all parents have gone through this - and most at an earlier age.  But, we officially now need to worry about toddler-proofing the house...adding locks to the second set of drawers, latching the toilets, reorganizing things on tables and shelves...and we're pretty happy to have to do so!

Walking in the Park

Today was another Mommy and Noah day.  Since February I have been off on Thursdays to spend more time with the little man and to accommodate his therapy schedule.  In February Noah got approved to have OT twice a week so I adjusted my schedule so I could take him on Wednesdays after work and Thursday afternoons.  This was before we changed daycare (OT is held at his daycare) but we have kept the schedule the same.  We started off the morning with PT at the house and he worked on getting up into a standing position without pulling up on something.  He was actually happy to work with Sandy this morning and had a great session.

After PT we ran a few errands and then it was nap time.  Noah was of course exhausted from not napping the day before so took a nice long nap this afternoon.  I actually had to wake him up and then we rushed over to Hand in Hand for his OT session.  He has come along way with his OT and she does a wonderful job with him.  It was really funny today because we walked in, he immediately walked straight over to Jane and then led her down into the therapy room.  I thought for sure he was going to make a run for it to try to get into the outdoor area but he nicely made the turn into the room and off they went.  He also had a good OT session so overall it was a good day.  As I said before sometimes he can have "disaster" days at therapy so it always makes me happy to see him go 2 for 2.

It was an absolutely gorgeous day here today so after therapy we headed down to the park.  I have been trying to do this with Noah every Thursday afternoon so he can get out and just play.  He loves the park-not so much for the swings or the slide-but for the kid watching and walking around.  It was really warm today and Noah had shorts on.  I didn't really think anything of it but as we were walking down to the park I wondered if anyone would comment on his brace.  We have only had the brace for about a month now and most of the time he has been wearing pants which cover it.  Today though it was out in the open and I was curious if we would get some stares or questions.  Sure enough as soon as I had gotten Noah out of the stroller and we were headed for the swings I heard a little girl say to her mother "Look that baby has a brace!"  She didn't make any other comments and nobody else asked me about it or said anything.  I was glad because I'm still at the point where I don't know the right thing to say when asked those awkward questions.  I am completely comfortable now talking about Noah with family and close friends but the questions from strangers still makes me nervous.  I know that I will have to deal with this because kids are curious (and adults for that matter) and questions will come up.  It is just knowing the right thing to say and how to say it.  I'm sure this will come with practice and get easier but I think it will always hurt to have to explain why Noah may be seen as "different."  I just hope others can always look past those differences and see what a wonderful little man he is.

We had a ton of fun at the park and spent most of the time just walking around.  To my excitement (and terror!)Noah let go of my hand for the first time today outside of the house and walked around by himself.  This was huge as the terrain was uneven and he really had to focus on his balance to keep going.  He did have a couple of spills but he got right back and kept going.  Needless to say he got a workout and by the time it was time to go there was no fussing.  He happily got into the stroller and we went to meet Brad at the train.  We had another great day and are looking forward to the weekend!

Halfway There

Here we are on May 16, just past the halfway point of our second annual "Streak."  Not exactly sure why, but I actually just went through and re-read all of last May's posts - I must admit, I got a bit misty eyed in a number of spots.  Also remembering all of the rain we got last year and my running streak really makes me appreciate the elliptical machine we bought!  Thinking about all of those fresh emotions last year at this time and the hard choices we've made since then.  How are you, as a parent, supposed to balance your child's long-term well-being with their right to be a baby/toddler/child?  The answer, of course, is there is no answer.  I think we're very fortunate in that Noah takes all of this on with an amazing attitude.  All of his appointments and the things we make him do - for his own long-term benefit - are not fair to him as a baby.  But, these are things we have to do to give him the best shot at being able to do whatever he wants to do when he's older.  I often wonder what that might be.  What will he want to do when he's older?  I often joke that he'll be a lefty relief pitcher for the Red Sox.  His left arm is so strong, I think he'd beat me in an arm-wrestle today.  He loves throwing the ball around the house, too...he already has quite the little cannon for an arm.  I can imagine him throwing 110mph some day - if he can just learn to hold a glove on his right hand!  In all seriousness, it does bring me back to what our jobs are - and it's really no different than any parents' job - we need to work with him to put him in a position to do whatever he wants to do with his life.  Granted, we have to take an alternate path and do things differently than most, but it's the same goal.  So while we're halfway through this May's streak, we know we're nowhere near halfway there with Noah.  We have a long, long way to go.  And that's not necessarily a bad thing....I can't believe that he's almost 20 months old and that we received his diagnosis over a year ago.  He's such a wonderful, special little boy...I've said it here before, and I'll say it again - we laugh together all of the time - he's a really funny, little kid.  Everything moves so quickly, sometimes we just need to slow down a bit, not think about what he's going to do when he's older, and enjoy some things as a normal family.   

Mommy and Noah Day

Today Noah and I spent the day together as we usually do on Tuesdays.  We started off the day by going to our group class that is run by Early Intervention (EI).  The class is called "Explore and More" and is for toddlers Noah's age.  It is always a lot of fun and today was no different.  The class ran according to its usual schedule-free play, sensory table, circle time, snack, gross motor, and art.  When I write all that out it seems like a ton but it is only a two hour class and it always seems to fly by.  It has been a great weekly activity for Noah and I and I think he really looks forward to it.  It has been great for me because it gives us something structured to do while we are home, I have been able to meet other Moms with children who have similar needs to Noah, and I have been able to see how much Noah has grown since we started going to class.

Noah and I first did a class last summer and it's crazy to think how far he's come since then.  At that time Noah was just sitting up and had not even started butt scooting.  That class was really more for the parents and it was a good opportunity for us to get accustomed to EI and get to know some of his therapists.  We didn't do a class in the Fall because of our crazy schedule and in December Noah moved up into the class he is in now.  When we started in December it just so happened that Noah was the youngest toddler in the class.  This was a little overwhelming for me because he wasn't walking and it seemed like he was so behind compared to the other kids.  I remember looking at some of the other toddlers in the class and thinking, "will Noah be able to do this?"  Fast forward to the last 2 weeks and Noah is doing everything!  He was running around the room, was one of the first to say "me," to pick his song during circle time, and has even started to hold his nose when we sing the "ducks go diving in the water."  It all seems kind of silly but it makes me so happy and I love seeing him grow and learn new things all the time. 

After class we went to the grocery store and then headed home for lunch and a nap.  Poor Noah only took a 20 minute nap yesterday and was still totally exhausted today.  He took a nice, long 3 hour nap today and I was able to get done all of my "chores" that I had put off this weekend because of Mother's Day.  I was even able to get my "streak" workout in which was great.  After Noah's nap we spent an hour doing constraint therapy.  Unfortunately, in the last couple of months, we have not been doing as much constraint therapy as we would like.  Noah went through a period where he was getting frustrated with it and we really weren't getting much accomplished.  Now that he is moving more and seems less frustrating in that area we have started up with the therapy again and are trying to do it for an hour four times a week.  I'm hopeful that we can do more in the future but for right now I think this works well.  He did pretty well today-got a little frustrated with certain activities but that is to be expected.  We ended the hour with playing with the cash register, his favorite.  The following is a video of him doing constraint therapy using the cash register from a couple of months ago.  Overall we had a wonderful day but I'm completely exhausted and heading off to bed!

A few pictures

Not much to report this evening.  Noah continues working on his walking - we played chase-Daddy-around-the-house again this evening, but only briefly.  He was tired - he only slept for 20 minutes at daycare when he usually naps for close to 3 hours when at home with us.  By the time we both got home, fed him dinner and gave him his bath, we were all exhausted on this gray, drizzly day.  More rain in the forecast tomorrow, so he and Susan are going to need their rest if they're going to survive being stuck in the house all day!  So, with not much to report, I'm posting a few pictures of Noah from the past 18 months or so - I was looking at these today as I was trying to clean-up my desktop at work a bit - made me smile and think about the wild ride we've been on so far.  Also, he's a pretty cute kid!

Mother's Day

Just got home from a wonderful Mother's Day dinner at my parents' house - they had most of my Mom's side of the family over and it was great to see everyone.  Noah was quite shy, but still the little star of the show.  He was walking all over the place, generally with one of several goals: chasing me, seeking food, or avoiding my bearded cousins.  The facial hair really through him for a loop, along with the unfamiliar house and loud adult chatter.  He's still quite shaky on his feet, but that generally doesn't stop him - when he falls, he is still far more likely to laugh than whine or cry.  His favorite part of the meal tonight was definitely the chocolate cake that they had for my sister's birthday (joint Mother's Day, her birthday celebration).  He housed a huge piece along with some Oreo-cookie ice cream.  Shortly after the cake, and right before we left to head home, he was playing with toys while on a huge sugar high - it was quite entertaining as things were flying all over the house!  The plus side is that he crashed just about as we got home, so he went to bed quite easily, despite the change-up in routine. 

We did a short, charity run/walk this morning that benefited Children's Hospital and was in honor of a Wellesley High School student who had been killed in a skiing accident this past winter.  A terrible tragedy, though it was nice event and several hundred people came out to participate along with a few local sponsors.  It was a mile walk - we intentionally started at the back of the pack.  Noah had been getting really antsy waiting for things to start as we had him in his stroller and he wanted out.  Once the race started, we pulled him out and the three of us and my Dad hit the course.  Apparently there was a little prize money for the top 3 finishers, so many took the run part seriously.  It was only a mile, down the street and back.  Literally, 200 hundred yards into the race for us, the winner came cruising back by us!  Susan and I looked at each other and scooped Noah into the stroller and picked up the pace - we were last by several hundred yards at that point and didn't really want to be "those people".  Fortunately for us, about 10 minutes later we were able to catch and pass a couple of middle-aged ladies who were having a great time chatting and pushing an infant in a stroller themselves.  As we got back to within 200 hundred yards of the finish line (and comfortably ahead of those two ladies) we pulled Noah back out of the stroller and all crossed the finish line together in just under 22 minutes!  It was a nice way to start Mother's Day - and we had a great time throughout.  Susan is now passed out on the couch next to me - I guess her sugar high has worn off too! 

Happy Mother's Day to all - and particularly to my wonderful wife, mother and mother-in-law!

Play Date

Noah is walking all over the place!  He is definitely in the "drunken sailor" stage, but it is absolutely amazing to us.  He laughs half the time he is walking, too - it's the cutest/funniest thing I've seen.  And he's so proud of himself - and so are we!  This kid is truly amazing.  His walking skills are progressing every day....this morning while Susan was training for her marathon in two weeks, Noah and I were playing "chase-Daddy-around-the-house."  We both laughed for 15 minutes straight as he chased me, I'd hide, he'd find me, and then we'd do it all over again.  The kid was full-on sweating by the time we stopped for lunch. 

We had our great friends over this afternoon who have a daughter who turns 1 this week.  She and Noah are in love after today and had an absolute blast together.  Noah is definitely going to give fathers all over our town heartburn as he grows up - he is a total flirt....he must of leaned in for kisses a dozen times this afternoon and he steadily progressed from aiming for the cheek to the lips!  He may be delayed in certain areas of development at this point in time, but I would say he's quite advanced when it comes to the girls! 

It was an absolutely gorgeous day today - mid 70's and not a cloud in the sky - and so we were all outside for a while.  The adults enjoyed an adult beverage while the kids flopped around on the lawn.  I thought Noah might have trouble trying to walk on the uneven ground in the backyard with the grass adding an additional challenge, but he surprised us and was able to walk around on his own a bit.  I know I keep saying it, but I cannot put down in words the excitement we feel with his every step!

Our streaks this year have been even more enjoyable because of his progress over the past few weeks.  Choosing to exercise everyday had a conflicting connotation in my mind last year as I worried about the extent of Noah's physical challenges in the future.  My challenge last year was that running every day, in honor of my son, would inevitably make me wonder if he would ever be able to do the same.  This year, it's an entirely different feeling.  "Through the quad and into the gymnasium!"  With every step I take, I know he will be able to be right there with me one day soon.

Here's a video we took two nights ago of him walking...he's even better today, but we haven't captured it, yet...

     

Speech Therapy

This week Noah started speech therapy.  Ever since we found out about Noah's stroke, and more specifically the location of his stroke, we were told it wasn't a matter of if but when he would start speech therapy.  He had an evaluation by a speech therapist back in the Fall and me made the decision to wait a little before starting therapy. He had his annual Early Intervention assessment in March and it was then they decided we should add speech into the weekly routine of therapies.  I don't necessarily think that he is very behind in terms of speech for his age but I think it is better to get him started in case problems should arise.  When we saw his neurologist at the stroke clinic in April he was adamant about starting so I'm glad things have finally gotten rolling.

Noah knows a number of words and communicates well with them and some baby signing.  I have to say I was skeptical on the baby signs but they really have come in handy.  He primarily signs for more, all done, and "my turn".  I'm also very proud of myself because we've been working on the sign for "please" this week and it has really caught on.  In terms of words Noah knows ball, yeah, bubbles, baby, sky, me, bye, and to our delight just learned Momma and Dadda.  He finally uses Momma and Dadda correctly and Brad and I get so excited every time he calls out our name.  I think Noah gets even more excited and it's very fun to watch. Bye is definitely his favorite word and there is nothing cuter than putting him down for bed in his crib and having him turn to you and say "bye." Noah also of course knows how to say Elmo as I'm beginning to learn many kids his age do.  Whoever designed that red furry muppet really knew what they were doing.  Noah loves him and I currently have to listen to Elmo's greatest hits at least twice a day (he went through a faze where he wouldn't eat sitting in his highchair unless it was playing) and I'm proud to say I know every song by heart.  He also used to call Elmo "Dadda" but we don't like to talk about that (at least Brad doesn't).  In addition to starting to say new words Noah has also started to mimic animal sounds.  This I find to be absolutely hilarious.  We'll be driving in the car and all of a sudden I'll hear him saying "ruff" and I'll look out the window to see a dog walking by.  He also knows that a duck says quack although he says "cack cack" and a cow says moo.  He really is at such a fun age and it's things like this that remind me he in a lot of ways is just a typical toddler.

From the note from the speech therapist it seems that things went well today.  I'm glad to have someone monitoring him speech wise and hope it helps him continue to progress.  Looking forward to a nice relaxing weekend with my family!

Children's

This morning Noah and I made our monthly trip into Children's Hospital.  Since January I would say our appointments at Children's have spaced out a bit and we generally average one trip in a month.  We usually see Noah's OT, Jessica, once a month and the other team of doctors; his neurologist, the stroke clinic, and CP clinic, we are now seeing about every 6 months.  This has made things a lot easier for us as getting into the Longwood Medical Area isn't much fun.  I have tried scheduling appointments at different times during the day but I've come to the conclusion it doesn't matter.  The fact is it's a hard place to get to but it's worth it and I'm very happy with the care he receives there.

Today instead of seeing Jessica we had a follow-up with one of the physical therapists.  She works with the CP clinic and has experience working with children with strokes so we have had several "check-in" appointments with her to monitor Noah's progress.  The main purpose for today's visit was to have her take a look at Noah's brace and make sure everything was fitting properly.  We last saw her about 6 weeks ago, at the end of March.  It was at that time that Noah was at the height of his fussiness/frustration and to put it simply was a nightmare at the appointment!  He screamed the whole time and refused to do anything with her.  He was still butt scooting at the time and had no interest in trying to pull up or walk.  We made it through the appointment but it was a disaster.  We have had several of these "disaster" appointments with therapists and they are always extremely hard for me.  It breaks my heart that Noah gets so frustrated and that we have to make him do things he doesn't want to.  I always have the thought in the back of my head that it's for his own good but that doesn't make it easier.  Luckily today was the total opposite!  As Brad had pointed out yesterday since Friday Noah has been getting more confident and walking more independently every day.  I was amazed today how he buzzed around the therapy room showing off his new skills.  Of course he was so happy with himself and smiling the whole time.  The therapist said he looked "wonderful" and gave me some pointers on exercises to do with him at home to help encourage him to stand without pulling up.  She also looked at his brace which she thought looked good (of course tonight I noticed a red spot on his foot so may be headed back to the brace shop..).

After our appointment we headed down into the lobby to take a look at the fishes and have our "treat."  I have kind of made this a routine after appointments so Noah can have a little fun and I can just take a minute to recoup.  Sometimes Noah's appointments can be overwhelming and there is a lot to digest.  I like to be able to take 10 minutes after, watch the fishes swim by and share an oatmeal raisin cookie with Noah.  It's so much fun to see how excited he gets to see the fish and I always end up feeling good when we leave-even if is was a "disaster" appointment.  Today was no different and I happily watched as he cruised around the tank yelling with delight at each fish he saw!

A Day We'll Never Forget

Today was an historic day for us! On Wednesday's, Noah has OT after daycare (his OT is actually at his daycare, so it works out great). If I catch my usual train, I will often beat Susan and Noah home - which is what happened today. I was upstairs changing when they got home. I came down the stairs, turned into the living room, and who was walking towards me? For him it was like it was no big deal....he walked by me and into the downstairs guest room like it was nothing. Of course, he promptly fell over with a crash, but as usuall, he just laughed when that happened. Susan and I just stared at each other in disbelief! I cannot explain the feeling, other than it was surreal! He's walking and the sky's the limit! We didn't catch a good video tonight, but we'll get one and post ASAP. The daycare center told us that Noah was walking all over the place during the day, too! So exciting - we're not sure quite what to do...I think we'll just try to enjoy this one!

Storytime

Well - we've had a bad run here with the blog.  I had told Susan that I would write it last night, ended up working until 11:30 and it slipped my mind, somehow.  Then, our plan was to make up for it with two posts today.  Susan spent over an hour earlier today writing a post and wanted me to review it before publishing...we just logged in to go over the draft and it had vanished from the site.  Needless to say, we're annoyed with ourselves and the site.  As disappointing as it is to us - we don't have the time or energy to worry about it.  Onto the thought of the day.

I really haven't told that many people at work about Noah's stroke - it's one of those things that doesn't really come up.  Almost everyone in my immediate department knows and my good friends at work know - but I haven't brought it up much more broadly.  I told two colleagues today.  One noted, in jest, that the "Live Strong"-like purple bracelet that I wear everyday nicely matched the purple tie I was wearing today (wearing one everyday during May for part of my streak).  The other was making small-talk, asking how old Noah is (19 months) and where he is in his development.  I'm getting better at telling people and keeping the ensuing conversation minimally awkward for the other person.  Time does make most things easier; more normal.  That said, I do worry about what Noah will have to go through - likely his whole life.  At the CHASA picnic on Saturday, I was talking to a young girl, Olivia, and her father.  She is probably 13, or so, and they had just moved this past summer, translating to a new school system for her.   At her old school, all of the kids had grown up with Olivia and they knew the story and it was no big deal.  But now, at the new school,  it has been "annoying" to have to go through her story to a whole new group of classmates. 

I worry about Noah having to do this himself when he's older - how will he tell his story.  Kids can be mean - really mean.  But, at the same time, I look at the past year and see that things have certainly become easier for me.  I was recently reminded that Noah doesn't know anything else - everything for him is his normal.  Keeping things in that kind of perspective is not only important, but comforting to a degree.  Noah is an amazing little boy - he's incredibly social - and I know he's going to be much better at telling his story than I ever will be.        

Great Weekend!

I have to say that this weekend really was great!  I managed to get my long run in yesterday (marathon is just 3 weeks away!), we went to the pediatric stroke picnic yesterday which was a lot of fun, was able to sneak out for a massage and pedicure this afternoon to use my Mother's Day gift from last year, and then spent some time with Noah and Brad at the park.  Noah had a great time and especially loved the slide.  It's funny because these days he's really not as interested in everything at the park as he is to just walk around.  Today when he was ready to leave he took Brad's hand and he "walked us" almost the whole way home.  It's still so amazing to me to see how far he has come in just the past 2 weeks!  Check out the video of him walking in our kitchen-so proud of himself!

Picnic on the Common

We attended the annual picnic on the Boston Common with local families in the same situation as us - organized through CHASA.  This was the second time we have attended this event - and I would say that it was a lot better this year than last.  Last year, we had received Noah's diagnosis just a few weeks prior and the whole thing was overwhelming.  I'll never forget walking up towards the group last year, standing around the outskirts and Susan and I discussing leaving before we even introduced ourselves.  We ultimately stuck it out, and it ended up being okay before thunderstorms rolled in and we all ran for our cars.

This year, it was a whole different event for us, and we enjoyed it.  It was a great opportunity to talk with others who are going through the exact same stuff that we are and to learn about what others are doing to help their kids along.  It was comfortable this year and funny to think back to the beginning of last year's event when all we wanted was to get out of there.  Many of the families see the same neurologists, orthopedics and therapists that we do at Children's.  It was also really encouraging to see how well many of the kids are doing.  Here is a picture from today with Noah sitting on the ducks:

I also wanted to add a picture of Noah's new brace.  The "AFO" comes up about 2/3 of the way up his calf and really provides support and helps turn his foot straight forward when he walks as it turns out quite a bit. It was nice to be in a place where most of the kids were wearing a brace on at least one leg - some on bot h.  Since Noah got his two weeks ago, his progress walking has been unbelievable.  While we certainly never imagined that our son would be wearing a leg brace, the results have been great and we're glad he has it.  A few more unassisted steps today - and all he wants to do is walk all day long!

Suprise!

Well it's finally Friday and I am so happy to be able to say this week is over!  This was a long draining week that just seemed to drag on forever.  Although it was long it ended with an amazing "surprise" from Noah this evening that made it all worth it.

As usual I was running late to pick up Noah after work (I think it's a theme in this blog!) and got there right at 5 PM.  I work about 30 minutes away from the daycare so it's always a production trying to finish up at work and get there on time with rush hour traffic.  This is something new for me and I'm still getting adjusted to the new schedule as back in March we made the tough decision to switch Noah's daycare.  This was something that was very difficult for us and came after a lot of careful thought and consideration.  It was so hard because we absolutely loved his daycare providers and really felt that they treated him as part of their family.  We ultimately decided to send him to a daycare for children with special needs so it would be easier to coordinate his therapies (he currently gets OT there) and give him a little more structure.  We are all still adjusting and miss Wendy and the rest of the gang very much.  Noah is finally starting to get into the new routine and I think he really likes it.  He still isn't napping there (he averages about a 30 minute daily nap!) but he seems to be very happy.

Today as I rushed into Noah's classroom he was sitting on the floor quietly looking through a book.  He smiled at me as I walked in and started to "butt scoot" his way towards me.  One of his teachers stopped him and said "Why don't we walk towards Momma?"  She helped him up to standing, took him by his left hand and started to walk him towards me.  As they made their way around the table and were about 10 feet away from me she let go of his hand.  I watched in awe as he WALKED, all by himself into my arms.  I was totally overcome with happiness and being the emotional sap that I am just started to cry.  It was the best surprise of the week and I was so proud of my little man.

Familiar Turf

I hit up my old running route this evening. Susan has been at a conference the last couple days, so she's been coming home a little later than usual...just in time to put Noah to bed. We remembered last night how bad it is to do our exercise streak after dinner - so tonight, right after we put Noah down, I went for a run while Susan used the elliptical in the basement. Two things came to mind while running: (1) I really hate running and (2) if i have to run, I liked running with Baxter the dog a lot more than not running with Baxter the dog. He just turned 3 last week, as a matter of fact - and we're coming up on one year since we gave him away. I have no doubt that we made the right decision - he's with a wonderful family that loves him - but I do miss him. He definitely brought energy to everything - most usefully, on my runs last year during May! I grabbed a few groceries on the way home from picking Noah up. When we got home, I plopped him down to play so I could put them away. Not less than two minutes go by, and, much to my surprise, Noah comes walking into the kitchen pushing his walking toy proud as proud can be. This kid is on a roll right now, figuring things out everyday. It really is amazing to us...I mentioned last night that it was only just over two weeks ago that he learned to pull to stand. What I didn't add was how frustrated we were becoming with his progress. He had been butt-scooting for 5 months, and, while he would walk while holding our hand, he wasn't showing too much interest in pulling up. We were worried that he was too content being upright while butt-scooting and may not be motivated to stand. How wrong we were! I'm sure it's the same with most kids, but we have nothing else to compare too. With Noah, it seems like every time we've started to get familiar with the way he goes about doing something, sometimes wondering how he'll ever figure out how to do it like other kids, he does. He keeps moving on...so we must too. Tomorrow, I'll skip the familiar turf - a different running route for sure!

Going in Circles

Here we are - two for two on our streaks.  Susan wrote the blog last night - I'm up tonight...and we've both hit our exercise goals each day/night (tonight was post sushi for dinner - not the best idea!).  I've been thinking a lot about this blog lately and I'm kind of glad we're forcing ourselves to do this everyday again.  We've been bad about not updating it - it shouldn't take our "streak" to do so.  This blog was so helpful to me last year - it came at a perfect time during which I was lost with no one really to talk to.  Putting thoughts and feelings down here was therapeutic.  But, here we are a year later - coming full-circle in some ways...though in others, certainly not.  I'll try to provide some perspective. 

Thinking about today versus a year ago.  Do I still get upset?  Of course.  Will that ever change?  Perhaps not.  Did I ever think in my worst nightmare that we'd have to go through all of this crap?  Absolutely not.  The past year was pretty terrible - I won't lie.  Learning of his diagnosis, dealing with all of the surreal doctors' visits in the dark corners of Children's Hospital and then the screams, tears and frustrations of our little boy - our baby - while we forced him to work and to do things that are hard for him (easy for most), while most other kids his age just get to be babies.  Thinking about what challenges he'll face growing up (will he ride a bike, play basketball, drive a car) and into adulthood and beyond.  And then trying to put up a good front when we haven't always felt that way has been exhausting at times.   

But, looking at where we are today, I think we're in an okay place.  We have figured out a schedule, we have figured out the things we need to do, we have figured out who and where we can turn in times of need.  Noah has been making a lot of progress lately, and we're really proud - both of him and ourselves.  And that's okay to say - we deserve to say it.  Hopefully you saw that video in last night's post (if not check it out below).  He literally only learned to pull himself up to standing two weeks ago!  Now he's cruising around behind a toy like he's been doing it for months.  While he's a little delayed in his speech (as was somewhat expected), he's babbling away with around 15 real words - and he seems to understand many more.  Everyone seems to think he's right on schedule cognitively (if not even a bit ahead). 

Perhaps most importantly, Susan, Noah and I laugh together each and every day - he is often quite a little clown (I can't imagine where he gets that from!).  And in these times, I often have to remember to bring myself full-circle...to stop thinking and worrying about some things now, at this point in time - and to just enjoy Noah as he is...our amazing baby boy.             

Shoes

For the past week I have been obsessed with shoes.  Not shoes for me like a cute new pair of summer sandals, but shoes for Noah and his new brace.  A week ago Noah and I made a trip into Children's Hospital for a long morning of 3 appointments that included his first brace fitting.  We had started discussing the possibility of a leg brace/orthotic for Noah about 6 months ago.  At that point Noah had just started "army crawling," was getting the hang of his butt scoot and really showed no interest in wanting to stand or walk.  The orthopedic MD we met with at the time told us to wait and see how he progressed and come back and see him at the Cerebral Palsy Clinic when he turned 18 months.  Fast forward to the end of April and Brad, Noah and I all headed into Children's for a 4 PM visit at the CP clinic.

I had been warned that the CP clinic could be a little overwhelming and that we should be prepared "to be there for awhile."  We armed ourselves with lots of snacks and tried to make it as entertaining as possible for the little man.  We met with an orthopedic MD, physiatrist, and physical therapist who after watching Noah crazily walk around the exam room suggested he be fitted for an AFO or ankle foot orthotic.  They told us that would be the best for Noah to help get his foot in better alignment (he tends to turn his right foot out which is apparently a normal occurrence after someone has a stroke) and strengthen his leg.  They also suggested we get him set up with a walker and an arm brace but I'll save that for another post!  So finally after getting done with the doctors we headed down to the basement and somehow found the brace shop.  At this point it was about 5:45 and Noah was on the brink of a total meltdown.  He had eaten all the snacks I had strategically packed-mini bagel, fruit pouch, oatmeal raisin cookie from Starbucks; and was working off of a 30 minute nap at the new daycare.  Needless to say as they took the casting of his leg, quickly showed us what the brace would look like, and we picked out the perfect decal for it (patriots logo of course) I wasn't paying close attention-just trying to keep the kiddo calm.  I looked at the brace quickly and thought OK if this is what we have to do then we will do it.

Two weeks later Noah and I headed back to Children's for our epic morning of appointments.  Of course we were late so in the process of getting out the door at a reasonable hour I forgot to bring his new shoes.  The woman who had made his brace said he would need bigger shoes for the brace so I had planned on bringing the bigger size of shoes I had bought a month ago on sale for Noah to grow into.  Oh well I thought-I'm sure we can make these work.  Unfortunately I was mistaken.  As the woman brought out Noah's brace I was amazed at how large it actually was. She trimmed off some excess plastic and slipped Noah's foot/leg into it.  We attempted to put his shoe on over it but there was no way that was going to happen.  She politely told me that Noah still had "pudgy" baby feet that were quite wide.  She suggested I find shoes that came in extra wide because they would probably be the only ones that would fit. 

After his nap later that afternoon I put the brace on Noah for the first time.  Much easier to put on than I thought but again much bigger than I had remembered-also a lot more dangerous!  Noah loves to kick when he is on his changing table and I thought he was going to kick right through the table with that big piece of plastic on his leg.  Anyway I got out the new "bigger" shoes and attempted to put them on.  Again no freaking way that was going to happen so it was off to Stride Rite we went.  We explained our situation to the sales person and showed her the brace.  She brought out some extra wide shoes for Noah and they seemed to fit over the brace.  The only problem was to get them big enough to fit on his right foot the shoe on his left was huge!  She assured me that they fit fine and off we went.

Since then I have been obsessing over his shoes!  They seem to fit OK but I'm still convinced they are too big.  I have gotten suggestions on special shoes made just for AFOs, places that will sell you two different size shoes (Nordstrom's will but only if one is 1 1/2 sized different-in case you were wondering), and what brand makes the widest shoes.  I have talked to his PT, the people at his daycare, and even posted about it on Facebook.  I have  been worrying about what he will do in the summer and can he even wear sandals?  It's all really silly when I think about it and today I came to the conclusion that we will figure it out. It's just one more thing we hadn't planned on but we will learn with Noah on this crazy journey.  And besides-take a look at how much of a difference this big brace and extra wide shoes are making for Noah.  He's walking and it's amazing...

We're Going Streaking...Part II

So, here we are...one year later.  Not really a great track record with keeping up the blog over the past year, but nothing like Pediatric Stroke Awareness Month to get it going again.  May 1 is Tuesday - we will post to this blog everyday during May.  I will run or go on the elliptical machine everyday - as well as wear something purple to work everyday (purple is the official color for CHASA - Children's Hemiplagia and Stroke Association).  Susan will similarly exercise each day, and highlight the month by running the Vermont City Marathon in Burlington on Sunday, May 27 (Memorial Day Weekend).  Please visit her fundraising webpage via CHASA and consider donating to help kids just like Noah:

www.firstgiving.com/fundraiser/susangodfrey/streak-for-pediatric-stroke

We'd love it if you joined us with a streak of your own - if you do, please let us know!

It's been a long year, but, all things considered, I think we're in a pretty good place.  Noah will be 19 months old on May 1.  Two weeks ago he finally learned how to pull himself up to stand!  He walks quite well when holding a hand and is getting close to being able to do so himself.  He just got a brace for his right leg this week, and it seems to be helping already.  His preferred method of transport is still "butt-scooting" all over...and while we're anxious for him to walk, we also can only imagine the trouble he'll get into assuming his butt-scooting is an indication!  Our schedule is quite busy, but who's isn't?  Noah has 2 physical therapy sessions and 2 occupational therapy sessions per week.  He also heads to Children's Hospital once per month (on average) for an additional session.  His doctors are pleased with his progress and so are we, though we admittedly get frustrated from time-to-time.  He remains the happiest and most lovable little boy in the world (I might be biased) and his infectious personality only continues to grow.  He truly is special in many, many ways! 

I'll stop here - there's a whole month of posting to come - need to save some interesting stuff to keep you reading!  Thanks for keeping up with Noah!

"We're going streaking!  Through the quad and into the gymnasium!"
- Frank Ricard (Will Ferrell), Old School

Happy New Year!

New Year's resolution - post more to the blog.  I must say that Susan and I are extremely happy to close the book on 2011.  It was certainly a rough year, though we are eternally optimistic that things will only get better for our baby boy.  Reflecting back, I'm extremely proud of how we have handled everything and what we have been able to do since learning of Noah's diagnosis.  We could have crawled under a rock - and we often wanted to during those early days.  Susan has been amazing - she is truly tireless.  Our friends and family have provided an amazing support system - we couldn't have moved forward without you. 

And Noah - our beautiful son - has proved to be the strongest person I've ever met in my life and he's now just 15 months old.  To think that there was a very real possibility that we would never have met him 15 months ago brings tears to my eyes.  I cannot imagine my life without him - he makes me better at everything.  Despite all of the crap he has to go through, he remains the happiest kid I've ever seen.  He particularly loves other kids and animals.  He loves to eat; he loves peek-a-boo; he loves books; he loves to be chased around the house; he's extremely ticklish.   

His schedule is hectic, to say the least.  He has two physical therapy visits, one occupational therapy visit and a class he goes to each week.  He also goes to Children's once a month for another therapy visit and then periodic visits with the neurologists, orthopedists and other various specialists.  Susan and I continue to do the constraint therapy with him each day (with one off day per week).  And, somehow, he still has a big smile on his face.  Also, and most importantly, he continues to make progress with the use of his right arm (which currently is his biggest developmental challenge).  He's really close to being able to pull himself up to stand - he does so to his knees now.  We hope he'll manage that soon and also hopefully start walking within the next few months (may need a brace as his foot is turned out).  His speech seems to be developing without any delay relative to other kids as he has all sorts of noises and some words - though he doesn't seem to consistently know what he's saying yet. 

Want to keep this somewhat brief - as mentioned, we'll be better on the blog.  Here are a few videos from this afternoon's constraint therapy session - ignore the background music!