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.