One Week to Go!

As we head into the last couple of days of May we are gearing up for the big tournament!  One week from today we will be hosting the first ever "Pars for Pediatric Stroke" golf tournament.  The tournament is really our "streak" for the month and we are hopeful that we can raise a good amount of money for CHASA.  We have put a lot of time and effort into organizing it and I really hope it is a success.  To warm-up for the big day we headed out to our favorite 9 hole course in Plymouth on Sunday.  Noah absolutely loved it and is already asking when he gets to "go to the big course again."  In honor of the tournament here is a a video of Brad helping Noah with his game!

Bike Ride

Happy Memorial Day!  And apologies for not updating the blog in a few days!  Has been a busy couple of days and hopefully we can finish out the end of the month strong.

We had another long weekend here and spent the last 2 days down in Plymouth with Brad's parents, brother and sister, and aunt and uncle.  It was a great weekend and nice to get away from our to-do list here at home.  Noah of course had a blast and I'm not sure that he wanted to come home today.  He even fell asleep on the car ride home which is definitely a sign that he enjoyed (wore) himself out.  Yesterday Brad played golf with his family and Noah and I hung out for the afternoon.  It was a beautiful day and we decided to take a bike ride along the Cape Cod Canal.  Noah has been doing really well on his bike and has even started to ride it without our help.  We got him a tricycle for his birthday back in October.  He had started to learn how to ride a tricycle at camp last year so we decided to get him one so he could keep it up.  He didn't really get it at first but this Spring he finally figured it out and is now cruising along by himself!  He still gets a little stuck because he pedals much harder with his left foot, but he has gotten the hang of it.  It helps too that we got him straps on the pedals so it is easier for him to keep his feet in place.  It is also a great two-handed exercise for him to do because he has to keep both hands on the handlebars.  We had a great time on our ride (I just walked of course) and I realized that the canal is a great place to take a 3 1/2 year old boy.  He had a wonderful time taking in all of the "sites" including multiple boats, 2 trains, a bridge full of "traffic," several dogs, birds, and of course lots of different people.  Noah was particularly intrigued by the man riding his bike without shoes or a shirt.  He of course asked me "Why?" and I had to come up with some sort of creative answer.  It made for bike ride full of interesting conversation!  We ended up going for about an hour and I'm sure it will be a regular event when we are in Plymouth.  Check out the video of him riding by himself!

Running

As mentioned, I am running everyday for my streak during this Pediatric Stroke Awareness month as I have for the past three years (this is the fourth "streak" for us).  I really don't enjoy running - the reason i doit for my streak - though I admit it goes a little easier everyday (don't tell Susan).  That said, my feet, knees and legs get a little beat up as I do not run regularly and then all of a sudden (as far as my body is concerned) I start running everyday.  Nothing major, but little aches and pains here and there at my ripe old age of 36.

Noah has accompanied me at times in the past in the Bob (running stroller), but this year he likes (insists?) to actually run along with me for brief periods and it's great!  We run around our neighborhood which is a nice, enclosed loop....we race to fire hydrants or lamp posts and he always beats me!  And he typically runs for a pretty good chunk of the loop - and when he doesn't I usually circle around him a couple times.  When I've circled back behind him far enough that he is sure he can win, he calls out the next race finish line and takes off running again.  It's all very cute, quite frankly.

I hadn't really thought too much about it when he started other than, this is kind of great....but I've noticed the past couple of days that his running stride is really getting better and he's definitely getting faster.  He still keeps his right hand bent and close to his body most of the time he is running - a pretty standard position for kids like him when they exert themselves - but that seems to be getting a bit looser, too.  Far from perfect form, but we're making progress and having fun. Practice, practice, practice!  And, it certainly makes running for me that much more enjoyable.  I'll try to snap a video one of the days....haven't got one yet.    

Fun Weekend

Had another great weekend and we are all definitely exhausted!  Noah was really busy- went to "Touch a Truck" yesterday morning and then spent the day today playing with some friends at a BBQ.  The "Touch a Truck" was a great event and really all it entails is a bunch of trucks in a parking lot that the kids can climb on/into and pretend to drive.  As you can probably imagine Noah absolutely loved this (he still hasn't outgrown his traffic obsession)!  He was running around to all the different trucks and couldn't get enough of it.  He did have some trouble climbing up on to them, but as usual he tried as hard as he could and made the best of it.  Was so cute to see him "driving" the trucks and making himself use 2 hands on the steering wheel.  As I think we have mentioned before he has gotten much better at holding on to things with 2 hands and I think this has been the biggest carry over from camp.  His favorite truck was the cement mixer and of course we waited in line for him to sit in this truck twice.  He was very cute pretending to honk the horn and asking how to turn the music on.

Later in the afternoon we went for our daily walk/run and Noah basically ran the entire circle without stopping.  He is getting quite fast!  Brad also put together the slide/climbing structure that has been sitting in our garage for the last 2 years and Noah was very happy to play on it himself.  He of course asked where the stairs were as he is still very nervous about climbing the ladders on these type of things.  I basically made him do it by himself and he did figure it out.  It wasn't pretty but I'm sure he'll quickly get the hang of it.  He called it his "pirate ship" and I'm hoping he will get a lot of use out of it.  Today we went to a BBQ at a friend's house and then Uncle Trevor came over for dinner.  Noah really loves Uncle Trevor and had fun showing him his new slide and playing golf in the backyard.  He also even asked him to help with his nightly stretches!  I guess this has finally become part of our routine and I'm really glad that we have been doing these every night.  Hoping that we can keep it going once the month is over.  Off to bed now as we are back to 8 AM OT in the morning!

Constraint Therapy

We continue to do constraint therapy with Noah - where we limit his left hand and essentially force him to use his right hand.  Given that he is still only 3.5 years old (he definitely sometimes seems older!), he certainly does not fully understand what is going on, nor the fact that he needs to "practice" with his right hand.  We have seen improvement over the 3+ years we have been doing this now - not leaps and bounds, but marginal progress.  And so, we keep pushing forward.  He's amazing resilient with regard to this - I can't imagine many 3-year olds would be thrilled by having one hand/arm casted while trying to play.  But perhaps since we have been doing it since he was 6-months old, he is quite used to it and even seems to largely enjoy it - at least for a while before it gets hard and old.  So, without further ado, please take a look at a few videos from this morning's session....as you'll note, we try to keep it quite fun (and I tend to get a little carried away from time to time!).

Activities

I had written previously this month about how hectic Noah's schedule can be - and I'm not quite sure how Susan keeps up with it, but somehow she is on top of it at all times.  I sometimes have trouble finding matching socks in the morning.  Numerous therapy sessions make up the bulk of his schedule - but we also try to keep a balance of regular kid activities.....that balance that we strive for and is so tough to achieve properly.  But, we try - and I'm proud of that.

In addition to school 4 days per week, we also have soccer (previous post - FYI, we had a great one-on-one game in the living room tonight before dinner!) and he goes to My Gym where he gets to do fun, regular stuff - quasi-gymnastics.  The people there have been absolutely wonderful with Noah since we started going there almost a year ago - they always take the extra time to provide him a little extra help....just the help that he needs to be able to do some of these things.  Things that many would take for granted, but things that can prove a little extra challenging for Noah.

But, no matter the challenge at the gym, Noah seems to always be up for it and is always willing to try....and typically he ultimately is able to do it, though often with help.  And that is when I couldn't be prouder of him - we try; he tries....it's just what we do.  Here are a couple of videos from this week at the gym that Susan took....enjoy!

E-stim Part 2

Today Noah started off his day with OT.  I had written at the beginning of the month that we had an appointment with one of the therapists at Children's on May 2nd.  This appointment went well and we decided we were going to try electrical stimulation on Noah's right arm.  When I met with the therapist I told her I was unsure if we could do this at our local center, and we made plans to set up an appointment with a different therapist at Children's.  I was assured that I would hear from her to set up the appointment by Tuesday (last Tuesday that is), and of course haven't heard a thing.  This has been one of my main concerns with continuing therapy at Children's and I have to say I am a little annoyed.  Anyway after that Friday appointment, Noah was seen at his local place as usual for PT on Monday.  I was able to talk with his OT during this appointment and she said that she did not have experience with e-stim, but they could do it there and there were several other therapists that could help with it.  Since I knew it was going to be difficult to get anything set up at Children's, and I was concerned about insurance coverage (we already got some letter saying how they wouldn't cover an appointment at Children's for e-stim) I decided we should try it at our local center.

So last Wednesday we showed up for Noah's OT appointment and they were all ready to show us the machine and start with introducing it to Noah.  I was very impressed with how they handled it and had thought about a plan to start the therapy.  Our OT actually had the owner of the center come in for the beginning of the session and this made me feel much more comfortable about everything.  I have to say that even though this OT may not have as much experience as the one at Children's she is so easy to talk to, always gets back to me when I have a question or need to get in touch with her, is willing to learn about different therapies, and is great about communicating with Noah's OT at school.  Not to mention Noah absolutely loves her!  Every day he knows he is going to see her he tells me "how much he loves her."  Anyway we showed up on Wednesday and they thought it would be a good idea to try out the machine on me to show Noah what it was all about.  I totally wasn't expecting this but went along with it and think that it may have helped.  It definitely felt weird and I'm curious to know how it will feel for Noah.  As we have mentioned in the past we're not sure how much sensation he has in that arm/hand.  It was also surprising to me how much it made the muscles in my hand contract.  I guess this is the purpose and what we will be looking for to have Noah perform certain activities with his hand. They didn't try it on Noah that day (he didn't want to), and we made a plan to make weekly morning appointments to see if he would tolerate it better.

Well the only morning appointment available was at 8AM on Monday.  Noah has PT on Mondays as well so I decided we would give it a try.  We somehow made it on time this morning and everything actually went really well.  She was able to put the "magic pads" on Noah's arm and he tolerated it fine.  She said that she turned it on and asked him when he felt the "magic" but she said that he could not feel it today.  This is totally fine as I think it is best to start off with things very slow.  They did this at the beginning of his session and he was very cooperative.  I'm glad that we made the decision to try this there, especially with someone that Noah is so comfortable with.  I also found out that when we plan to start doing this at home we can rent a machine there for $100 a month and they see if we can get a machine covered by our insurance.  I still have to do some research on the whole e-stim therapy and will reach out to the OT at Children's to let her know our plan and also to get some sort of "protocol" that they use with children with hemiplegia.  Feel good that at least we know somewhat what we are doing!  Otherwise had a great day and it was so nice to enjoy the warm weather.

Mother's Day

Today was Mother's Day and as in years past I had a wonderful day.  I woke up to Noah coming into my room with flowers, a great big smile on his face, and wishing me a "Happy Mother's Day!"  Apparently he came upstairs all by himself without Brad knowing.  It was extremely cute and really made my day.  Then we had a quiet breakfast and headed out for a family hike.

This was our third hike since January.  Not sure why we decided to go in January but we ended up having a great time and then went again about a month ago.  It's not very rugged "hiking," but more of a walk through the woods.  I think it's really good for Noah because it pushes him and forces him to have more body awareness while walking.  He tends to not pay attention to where he is going all the time so this is great for him.  It's also a nice way for us to spend some time together as a family and get some exercise.  It was beautiful here today and we had a great time!  I've attached a video and some pictures to check out.

We will be up and out early tomorrow as we have OT at 8 AM!  Mondays are usually our "lazy" days but have decided to give e-stim therapy a try at our local center so figured better to try in the morning when Noah is at his best.  Will give you an update on all of that tomorrow.  Happy Mother's Day to all those amazing moms out there!

Soccer

Brief post tonight in advance of Mother's Day...Noah has shown an interest in soccer - or football for you non-U.S. folks!  Since it's certainly a good sport for him to pursue, we have tried to encourage him.  He's great in the house or in the yard - actually quite good!  And his pre-school teacher has told us that he is legitimately her best kick-ball player.  So, he's in a soccer league through the Y this year - it's at 8:15 on Saturday mornings....which is pretty early and takes some significant effort to get to.  As such, we would hope that Noah would carry over his enthusiasm from home.  While Week 1 was a disaster and Week 2 was a bit better, but we're still not there.  Here is a video from his "game" in Week 2 (Week 3 was rained out this morning)...better than refusing to step on the field (Week 1), but not quite worth getting to the field by 8:15 on Saturday morning, either!  We'll keep holding out hope...

Day 1 of Chaos...

...no, not really.  Today went very smoothly.  Noah and I had a nice morning together, school drop-off when off without a hitch (I was a little nervous as he still tends to be pretty attached to me at times), Nani picked him up from school and took him to her and Papi's house for the afternoon and then I met them there after work.  On the way home, he told me he wants to spend "all of the days at Nani and Papi's house"....so I take it he had fun!

Our golf tournament to benefit CHASA at the beginning of June - right after Pediatric Stroke 
Awareness Month concludes for 2014 - is coming along really well.  It appears that we will have around 80 or so golfers, we have all 18 holes sponsored, we have received a number of fabulous prizes to raffle off and we have received additional donations on top of it all.  We really have been overwhelmed by the generosity and outpouring of support from our family, friends and colleagues.  While we sometimes feel like we face great challenges with Noah's therapies that others do not - that notion is simply not true...we are fortunate in many ways.  By benefitting CHASA, this is a way that we can bring further awareness and assistance to those families in the same situation as ours, but who may not have the means to give their kids the best chance to thrive.  Still room to play and/or time to donate - please contact us to learn how if you're interested!

Noah and Daddy Time

I have logged into the blog tonight and saw that Susan had originally started typing the following:

"As I mentioned last week, at our appointment at Children's on Friday we discussed starting electrical stimulation with Noah on his right hand/arm."

She unfortunately got tied up running around today and left this evening after dinner for a two day conference.  Furthermore, I am utterly unqualified at this point to continue the above discussion!  So, you'll have to wait a couple of days to learn more about doctors and therapists hooking Noah up to electrodes!  It's really not that bad (no pain, just stimulus) - so I understand...

What I can talk about is the chaos that is about to ensue as it's just Noah and I for two days without Susan who has truly taken over as CEO of the mini-organization that is his schedule.  I'm envisioning Noah and I will be sitting in our underwear on the couch by Friday evening with the house a total disaster...just kidding, Susan...relax and enjoy!

While we will both certainly miss Susan the next two days, I am interested to see how I do with a 2-day glimpse into this routine, albeit with a slightly lighter schedule than normal.  Also, I hope Susan is able to enjoy herself a bit - although she's at a medical conference - as she certainly deserves a couple of full days surrounded by adult conversations!  

I'm also excited to be able to spend some extra time with Noah who, when not whining about something that 3-year olds like to whine about, is a really cool little guy and I love being with him.  He has developed a great personality over the last couple of years - he's a comedian, he loves to have fun, he is mischievous, he is inquisitive, he is talkative, yet he is also shy when presented with new relationships - though he will usually open up just as it's time to say good-bye!  I love seeing him presented with new situations, wondering how he will react.  He never ceases to amaze me.  Aside from endless appointments and therapies and exercises and stretching and braces - which sometimes seems overwhelming - I often find that I totally lose myself in all of the things that he has become and not thinking about the things that he may struggle to do, now and beyond.  These are my favorite times - those when he is Noah and I am "Daddy"...and that's it.  I don't mean to downplay the challenges that he faces (and that we all do, as a family), but I also think it's of critical importance to just be "normal" sometimes, and enjoy each other.  

This is a balance that Susan and I talk about quite a bit - how to balance the therapies he needs to improve his long-term quality of life with the carefree period of learning and exploration that childhood is supposed to be.  If anyone has seen the instruction manual for doing this - please forward along!  His schedule is quite crazy with some sort of formal therapy session seven times/week (4 of which occur during school).  We need to continue to make sure we balance this with fun time and normal kid activities such as sports, gym class, riding bikes, etc.  I think we do a really good job of this - something I'm proud of as a parent - but if there's one thing I'm sure of it's that we're not perfect.

Okay - that's enough of a rant for tonight....it's late and I've got a busy couple of days coming up!  Here's a photo I snapped of him with chocolate pudding on his face this evening after dinner (there was more before he buried his head in his arms just before I snapped it!)....never mind the concerned look on his face - let the chaos begin!

Short post

Short post tonight-I'm exhausted and nothing much to update.  Brad has been in Orlando since yesterday afternoon and I have been on Noah duty all alone.  I love Noah so much but two entire days/nights on my own and I'm beat.  It doesn't help that I had a 5:45 AM wake-up call and am pregnant : )

Anyway, Noah had school this morning and then we were off to the gym.  He has been going to a gym class weekly and recently moved up into the "big" kids class.  This basically means parents don't participate and we can leave if we want.  Noah has only been in this class for a few weeks but I haven't left him yet.  He seems to enjoy it and is getting more confident with each class.  It's still really difficult for him to do a lot of the "skills" they do each week but he always tries and never gives up.  I love to see his determination but it also breaks my heart that he can't do a number of things the other little kids can.  The teachers are great though and always give Noah a little extra attention.  Today they did the zip line and a relay race where each child had to run through a course while the teachers pushed hanging punching bags at them.  That really isn't a great description and I wish I had gotten a video of it.  Think American Gladiators meets Wipeout.  It was actually pretty hilarious to watch!

Then it was home for a quick nap (thank goodness!) and then out for our afternoon walk.  Happy to say the streak continues as Noah and I did our usual neighborhood loop times 2 and were able to do his stretches tonight.  They seem to be getting easier and we have worked in his teddy bear to the routine which definitely helps.  Off to bed now- school and OT tomorrow and hopefully will be able to give an update on our plan for e-stim...

Update Meeting

Today we were back to the grind and started off the day with Noah's "update" meeting at school.  I guess I should back up and tell you a little bit about Noah's school schedule.

In October Noah turned 3.  Once he turned 3 he aged out of Early Intervention, the state-run program that provided his PT, OT, and speech services.  As we had written last year, we had to be in our new house by May in order to contact the new school system and get him set up with pre-school and services.  Well as you know we did that and had our initial meeting with the school was last May.  At that time it was too late to set up our official IEP meeting with the school (end of the school year) so we had to wait till September.  We weren't really sure what he was going to be offered in terms of school and services, but did find out last May that the pre-school in town was only 2 1/2 hours a day.  This was definitely a concern and we didn't know if there would be any extended day options.  We decided we would just wait and see what he was offered and figure out a schedule once we had that.  He was in a great special needs daycare at that point, that offered pre-school, and we figured we would make things work between school and the daycare.  Well at the end of July we found out that his wonderful daycare was closing at the end of August.  This is when panic set in and we started to think about how we were going to be able to make everything work with Noah's potential school, my full-time work schedule, and Brad's increasing travel.  I really didn't want to stop working and was hoping that I could somehow work part-time.

September came and we finally had his meeting.  We were very happy to learn that he was offered 4 days of preschool with two 30 minute PT and two 30 minute OT sessions a week.  He tested out of speech which was also great news.  We were told that if we wanted there was a potential for him to be bused from preschool daily to another daycare in town.  There were two available daycares in town and unfortunately they could not accommodate him.  So at that point we made the decision that I would stay at home with Noah to get him to school to get his services, and also work on increasing his home therapy.  I was able to continue to work 1-2 days a week at my job until January and since then I have been home full-time.

Fast forward to today and we had Noah's update meeting.  It was just to let us know how he had been doing and to see if they were going to offer him services over the summer.  Well it seems that he is doing great and they continue to work on his goals, the main one being increased ability to complete bilateral tasks.  This is his biggest obstacle right now and what he needs to work on prior to kindergarden.  It's so hard because I forget all the little things that you need two hands to do and he still really tries to everything with one.  It was good to hear that he has been working hard and everyone is happy with his progress.  We also learned that he will be offered PT and OT for the summer session which runs from July 7th till August 7th.  This will be perfect as we are headed off to constraint camp again in August.  Can't believe we are planning the summer already!

Whirlwind Weekend!

Ahhhhh, my first post of the streak this year.....Susan had taken the first two and I failed to write last night after a long day filled with fun - perhaps too much fun and, thus, the blog did not get updated.  Quick recap of the weekend.

Noah is "playing soccer" at 8:15 on Saturday mornings....this was the second occurrence.  I put this in quotes since, as many of you are likely aware, three year olds don't really play soccer.  They flop through some drills and then play a "game" which is actually a pack of children following the ball around the field.  Noah has shown an interest in soccer and it is certainly a good sport for him to pursue.  He can actually kick the ball pretty far with his left foot (perhaps not a surprise if you are familiar with his cannon of a left arm) and, when prompted, he'll give it a nudge with his right foot.  He loves playing in the driveway and the yard...unfortunately, this did not translate to the fields of real competition.  The first day, he clutched my leg and refused to even walk on the field.  We talked about why he didn't want to play and he said he didn't like the other kids.  Of course, he had never met the other kids before - he tends to be quite shy at the outset of any new adventure or relationship. We talked about it a lot over the week and he promised me he'd play this time.  Well, he stuck to his word - at least for the first 2/3 of soccer this weekend.  He went through all of the drills and started the "game", but once he rotated out of the game for a bit - he refused to go back in.  He told me later it was because "the white guys were trying to get the ball from me."  The opponents had white uniforms while Noah's team is orange...apparently we have some more work to do!

Shortly after soccer on Saturday, we made the trip into Boston Common for the annual, Massachusetts chapter of CHASA to have its annual picnic.  This was our third since receiving Noah's diagnosis (there wasn't one last year)....it's a really good resource - helps to be able to talk about things that everyone there understands: AFOs, the OT and/or neurologist at Children's Hospital that everyone seems to see, issues at school, camps, dealing with siblings, etc.  It's always a little awkward at first, but then everyone relaxes and it's very helpful.  We actually had a bit of a tee-ball game break out yesterday, which was great....Noah did a good job of whacking a few, but his favorite part was running the bases.  All-in-all an wonderful event - again - aided by a nearly perfect Spring day in the city.

We then had to rush home for our first annual neighborhood "Derby Party" hosted by our next-door neighbors.  Our neighborhood is a really great, enclosed cul-de-sac of about 30 houses and there are a number of annual neighborhood events.  Since we're newer - we try to make it a point to go to everything we can.  And we're glad we did - though the horse we ended up with in the blind auction didn't do much for us.  We had a wonderful time - got to know more of our neighbors - and Noah had a blast playing with older kids.  He was the youngest there, but did an amazing job of keeping up as they marched around the yard, played basketball and soccer in the driveway, did there own "horse races" with inflatable horse sticks and god-knows-what-else.  We actually were inside with all of the adults while the kids were all outside for a period - all looking after one another and led by a couple of 10-year olds.  It was really cool to see him do so well in a "normal" situation and be accepted by the others.

Busy Saturday followed by a trip back into the city today to see Disney Junior Live: Princesses and Pirates with Matt, Meg and Emily at BUs Agganis Arena.  Noah was a bit unsure as we went in - he was initially terrified of the pirates and didn't want to go near the stage.  Once he realized that I hadn't spent $135/each to sit on the floor and that our seats were a "safe" distance from the stage, he calmed down and seemed to enjoy himself quite a bit (though he still insisted on sitting on my lap the entire time).  We followed up the show with a trip to Anna's Taqueria - the best burrito place in the Boston area which we lived across the street from (one of their locations) in our youth.   Noah and Emily seemed okay with their quesadillas, but were definitely more interested in playing together on the floor - not the cleanest place in the word, to say the least, but they had a good time.  Jared G - if you're reading this, I can feel your discomfort right now!

Wow - that was a long recap....meant to write more about what I'm thinking about these days.  But, I think I might leave it here for now - there will be 26 more posts this month (assuming no more Derby Parties within walking distance of my bed!) to cover some of that....it is funny that I typically have no idea where these posts will go when I sit down to start.  In brief - Noah is now old enough that we can really have fun together and he makes me laugh a lot...he's a clown.  As he gets older, part of me gets a little sadder that he's going to be singled out by other kids - kids are mean, it's inevitable, I hope we all are able to handle it when it comes, don't know how to do that.  I'm excited to be a father x 2 - this time to a little girl....though I still feel like it hasn't totally hit me (and we're only 10 weeks away!) - I guess when you already have a kid, it leaves less time to ponder the upcoming, life-changing event on the horizon.  Streak is off to a successful start - though I'm horribly out of shape.  I've run and worn something purple each day.  I plan to work in bike-riding this year a bit, too...we'll see if that happens or not.  That's it for now - tune in tomorrow after a margarita or two for Cinco de Mayo!

Children's OT

Today Noah and I made a trip to Children's Hospital for an OT appointment.  These days we don't have to go to Children's very often, usually only every 6 months for follow-ups with his various different physicians.  In December though he had a new hand brace made for his right hand called a DMO.  It's basically a glove that is supposed to help with wrist supination, keep his thumb and fingers out, and provide some sensory input (it is fairly tight).  The DMO was ordered by his orthopedist but we had to see the OT at Children's to get it fitted correctly.  It took a few appointments and alterations to get the fit right (it is custom made in England and takes 3 weeks at a time for alterations!) and he has been wearing it consistently since January.  Unfortunately though we have not seen too much of a difference in his hand function with it, and it seems to make it harder for him to fully open his hand.  We had concerns with it from the beginning and it was suggested we follow-up with the OT.  Well today we were finally able to get into to see her and had a productive meeting.  It is still fitting correctly, although looking at the fit you can see how much he has grown in the last 4 months.  I didn't even realize it but it used to hit his elbow and now it is almost an inch below.  I knew he was growing but seeing him everyday you just don't realize how much!  She could see what I meant about his hand/fingers not being able to open fully and wasn't exactly sure why this was happening.  She thought it had something to do with his growth spurt as well as tightness in his hand.  She adjusted his nighttime splint to help with this and recommended we have him only wear the DMO for 3 hours a day, and not on Tuesday/Thursday when he has OT at school.  We also spent some time talking about electrical stimulation for his right hand.  She believes he is a good candidate for this and suggested we start this before he goes back to constraint camp this August.  I have to do some research on it but from what I understand it involves stimulating his hand with electrodes to help initiate movement, and to increase awareness of the muscles in his hand.  I'm sure there is a lot more too it and after I do my research I will make sure to devote a post to it!  Anyway she wants him to try it and I think we will have to take him there to get set up with it.  The biggest concern is making sure that you increase the intensity gradually, and I want to make sure we start it with someone who has experience with it.  This unfortunately means we will most likely have to take a break from seeing our local OT and go to Children's at least through the beginning of camp.  The OT thought it would be best to introduce it now as we have several months before camp as opposed to waiting until September/October.  We will also have to get set up with our own machine at home and I will have to be doing some of the therapy (yikes!), so best to start before the baby comes in July.  So here we go with another change.  If there is one thing I have learned in the last 4 years it is always expect something to be changed at every appointment.  At first this used to really bother me but I'm slowly learning to "go with the flow" and that this journey will involve a lot of trial and error as we try to do the best for Noah.  The last hiccup will be getting insurance to cover it and trying to re-allocate the sessions he has now to Children's.  This is always the hardest/most frustrating part!  Luckily we have a great referral contact at his pediatrician's office and I'm hoping she can at least get me started.  Looks like I have my plan for Monday afternoon!  Off to bed now-busy weekend ahead...

Here we go again!

Well it is May 1st yet again and time to start off another "streak" for our little man.  As I'm sure we wrote last year I can't believe that another year has gone by since we started this last May.  So much has changed and it honestly feels like we were living in a different world a year ago.  We won't fill you in right now- there will be plenty of posts for that!  To start off I guess we should tell you exactly what our streaks are going to be.  This year for me I have decided to walk at least a mile everyday (or do 30 minutes on the Elliptical if it rains).  There will be no running or races for me as I am very pregnant and walking is hard enough (first change of the year)!  In addition I will make sure to do Noah's stretches with him.  I know this sounds like a streak for Noah but I honestly dread doing his stretches and know it is something I need to force myself to do.  Will try to think of some creative ways to make them more fun and enjoyable for both of us.  Brad is running or biking (new addition!) every day this year and is gearing up for his first run as I write!  I think Noah will definitely want to go with him everyday so should be interesting.

In addition we are hosting the first annual "Pars for Pediatric Stroke" golf tournament on June 5th.  Since finding out about Noah's diagnosis back in 2011 we have always talked about how great it might be to put together a charity golf event to benefit CHASA.  Well on a snowy day in early January I decided that we should stop talking about it and just do it.  So we got the ball rolling and now the tournament is just 5 weeks away.  We are hosting it with our great friends the Stevensons in honor of our two little stroke survivors Noah and Walt.  I can't believe how everything is coming together and was totally overcome with emotion about it yesterday.  It has been amazing how many people have offered to help us and the support has been overwhelming.  I'm so excited and hope it is a success!  I was thinking yesterday it would be great if we could do it every year and someday Noah could play in it.

We will also be blogging again this year although after much debate.  We are both terrible at keeping this up but when May comes around I think we both remember how therapeutic it can be to write about Noah and think about how far we have come.  He is doing so well- better than I could have ever imagined after finding out about his stroke on April 1st 2011- and we can't wait to fill you in on his progress!  Thank you for checking in and following us on this journey.  Here are 2 pics from our first day of streaking.