Walk Day and Graduation Day- warning, picture heavy!

A huge thank you to everyone who supported us as we raised money for Boston Children's Hospital!  (Official Thank Yous will be sent out in the next week or so.)  The walk was on Sunday and the weather was perfect.  We got there early so that we could try out the games, face painting, etc. and then headed out before the crowds.

The "official" team photo in front of the Hatch Shell.



I added our team name to the back of the shirts. 
Cutting out the stencils was a bit tedious, but freezer paper stenciling is pretty easy.



Bennett liked playing in the bubbles.

Getting his face painted for the first time.  He wasn't so sure what to make of it.



Hmm, would Bennett be a tortoise or a hare?



Bennett and Fiona pre-walk.




And we're off!



Perhaps the cutest moment of the day was when Fiona took Bennett's hand as we started off and then held his hand for the entire walk!   He asked a couple of times to be picked up, but we suggested that he take Fiona's hand instead and he kept on going!



Bennett and Fiona are just 2 of those 500,000 patients!


Another way they raise a little more money is by selling these "honor flags".  They are pretty inexpensive (only $20 each) so I'm surprised that more people don't buy them.  Alicia thought in the future there should be an "add-on" option on the donation pages so that donors might be able to more easily purchase them.

With our flags.

After the walk we went to the playground that was next to the start/finish line.  There was a climbing structure with a nice big slide.  This is not an easy climbing structure!  It got even worse at the top where you had to maneuver between two small platforms that had widely spaced netting between them.  Bennett kept wanting to go up again but Daddy couldn't handle it anymore.  I think twice was two times too many for his liking.

Instead the kids tried out this spinning disk.  Bennett seems to love all of these "thrill" type activities.  Can't wait to go to an amusement park with him!



Hugs as we said goodbye.

 Now let's review what happened the rest of the week.

I have a helper in the garden.  He also tried watering it one day recently by taking a microfiber towel, dipping it into his pool, and then dripping/squeezing the water out over the plants.  Not a very effective method, but it kept him happy.

He's also been very interested in puzzles.  Of course his favorites are a set of four Curious George puzzles that we have, but those are only 12 pieces each so they aren't very challenging.  We also have a few 24 piece puzzles that he enjoys.

I'm not sure how it happened, because I certainly didn't get any older, but Hanna somehow turned from the three-year-old that I first met into a high school graduate!



During the processional.  I wonder if they are smiling because someone else was taking their picture.  I was so far away they would have had no idea that I had a camera aimed at them.  (Yay zoom lenses!)

 And speaking of growing up, when did this happen?  He looks so much older to me in this picture.  (Taken during a mini run-around break during the ceremony.

A note to all people who will be on stage at a graduation, especially those who will be handing out diplomas or shaking hands with the graduates and thus having your picture taken:  Please be aware of the school colors and don't dress in conflicting colors.  The school colors were maroon and white.  The person handing out diplomas was wearing an orangey-coral.  It looked horrid next to the maroon robes!  (It doesn't look quite as bad to me in this picture, but in real life it was horrible!  Even Chris agreed.

Of course the wind picked up just as Hanna had to cross the stage, so she was fighting with her cap and her hair the whole time.

Throwing caps.  It looks really cool, but it must be a pain to try to find your cap again.  I asked Hanna how hard it was to find her cap and she said she only did a mock throw.  Smart girl!

In typical teenage fashion, after the ceremony locating the boyfriend was more importand than locating the family.  :)



With the proud parents.

The whole family.  Ooops, Uncle Kevin is stuck behind Hanna's cap.

Bennett walked back to the house with Grandpa. (Until Bennett had to take a potty break in some bushes.)

There's a tradition in town for families to hang a banner to acknowlege their graduate.

Let's not rush things too much, but here's my "graduate".

Hope you enjoyed seeing our week!

Skating, cooking, and everyday life

Once again showing how thankful I am that we live in the greater Boston area, here's an article about advances being developed in the Cardiac ICU at Boston Children's Hospital (where Bennett spent the first 2 weeks of his life before being downgraded to the regular cardiac wing).


To help give back to Children's for all that they've done for us, we are walking to help raise money. Initially we hadn't set up a fundraising page for Bennett, but now we have. Please consider supporting one of the three of us. (But if Bennett meets his $500 goal, he will be considered a "Miracle Maker".  Here are the links to sponsor us:

Bennett
Mummy
Daddy

And now for some pictures!

Bennett is pretty awesome.  Well, we knew that, but in this case I was meaning that he's pretty awesome about showing affection.  I know this won't last forever, so I'll take it while I can.  Pretty much any time we ask for a hug or a kiss, we get one. And this boy gives awesome hugs!

I think we may have figured out Bennett's favorite food.  Pancakes.  When he sees us getting eggs out of the fridge he thinks we also need a bowl, a whisk and the cookbook.  These days we have to make a double batch because a single batch isn't quite enough.  Leftovers get frozen and make a quick and easy breakfast.  Eating (and cooking) pancakes is serious business!

Trying to get the bag in the trash can.  This requires lots of shaking of the bag and then shoving it into the trash can.  Folding the edge over the can, however, is optional (to Bennett).

The train fairy came to visit!  We've had the train table put away since before Christmas.  I brought it up from the basement one night and Chris and I set up the track.  Bennett was so excited when he saw it the next morning.  He saw it when he was halfway down the stairs and started exclaiming about the choo choo.  A friend of mine passed along some trains from her son as well as some clips that hold the tracks together.  They worked awesome on the elevated sections- especially since we don't have enough risers to hold it all up otherwise.  Bennett is loving this, and playing with it multiple times a day.

We've given Bennett an old cell phone to play with.  The other night he was "talking" on the phone and trying to rest it on his shoulder.

I know this will come as a shock to you, but we went to Sturbridge on Sunday.  We mixed things up a bit and Bennett rode in the Boba on Daddy's back.  Here we are checking out the "ocken".

Every weekend in March OSV is having "Maple Days" where they boil the sap, cook with maple sugar, etc.  Towards the end of the visit we were at the fire where they were boiling the sap.  We were talking (and admiring the inside pockets on the woman's cloak) and Bennett had obviously had enough.  He kept asking for the oxen, the horses, etc.  Anything to try to get us to leave.  And then he asked for the "ock-neigh".  Hmm, I guess that's a combination of oxen and horse (Which he never says horse.  He always says "neigh".).  Then as we left that camp Bennett starts shouting, "BYE"  over and over again.  Luckily no other visitors were over there being disturbed by his shouts.  But the cute part was when the interpreters then shouted "bye" to him as well.
We also lucked out as we were leaving.  There's a patch of plants growing near the oxen in the center village.  And every time we walk past them I wonder what they are.  And every time I comment that I need to remember to ask someone.  As luck would have it, someone was walking by just then who overheard me and told us that the mystery plant is teasel.  Teasel is a biennial (takes 2 years to grow) and was used in the textile industry (and was still used fairly recently as a man-made version wasn't the same quality) to comb fibers in finished cloth- mostly for flannels, wools, etc.

Saturday was the start of a new skating session.  Daddy decided not to take lessons this session which means he gets to take pictures and videos.  Unfortunately he's a bit of a distraction to Bennett, although in this video he's distracted more by the other kids.  It's also nice though to be able to better see his progress than trying to watch from the other end of the rink.  He also lucks out and gets a teenage helper for pretty much one-on-one assistance during the class!

Bennett loves breakfast, in particular, pancakes.  And lately, he always wants a "nice" (knife).  He has a couple of play ones that he loves to use, and he likes to go into the silverware drawer and get us knives to use for dinner.  (Don't worry, they aren't sharp.  The sharp knives are all out of reach.) 

And the report is in...

US News and World Reports released their rankings of the Best Children's Hospitals 2012-2013 and Boston Children's Hospital was ranked as #1 in the Cardiology & Heart Surgery category.  Also, of the 10 categories included, it was in the top 3 of 9 categories.  And the one it missed?  It was number 4.  That's not too shabby!  (It receive 3 first place, 4 second place, 2 third place, and 1 fourth place).

I'm definitely glad that we live so close.  When we've gone to appointments and staff members are making small talk with us, they will ask where we live.  We really are one of the close ones.  People come from all over the New England area, not to mention the rest of the country and world to be seen at Boston Children's Hospital.  So to give thanks for all of the support that they have given us, we will once again be walking in June to raise money to help them with all that they do.  Chris, Bennett and I would be extremely grateful if you would consider donating to this worthy cause.  You can sponsor us here at my page, or here at Chris' page.

A medical update

I realize I haven't updated on Bennett's medical condition lately.  (Ok, I haven't really updated on anything lately.)  So here goes.



At the cardiologist- August 2011

August 2011 he saw the cardiologist.  It had been a few months since he had last been in.  The cardiologist he had been seeing had left to go to another hospital.  We considered staying with him, but in the end figured we'd rather stay with Children's. 

The ECHO was challenging.  Bennett did not like lying still.  They got some images, but not great ones.

We met (very briefly) with the new cardiologist and were told that everything looked good.  Come back in a year.

Fast forward to 2012.  When we left last year, they had mentioned the possibility of doing a sedated ECHO next time, but that they would let us know.  After a horrible experience with a kidney/bladder ultrasound back in February, Chris and I knew sedated was the way to go.  So I called and made it known that we thought it would be best if Bennett were sedated.  Finally we heard back that yes, they thought so to.  And then the appointment ended up being rescheduled a couple of times.

Finally at the end of September we were able to get in.  Being sedated meant nothing to eat after 2:30am the night before, and only clear liquids until 8:30am.  (Appointment scheduled for 9:30.)  Surprisingly he did well with nothing to eat, and didn't fuss about no milk.  He was more annoyed with the 2 hour drive to Children's in the morning.  Under "normal" circumstances it would take maybe 45-60 minutes, but it was rush hour.  Chris found some Thomas videos on his phone for Bennett to watch, and that kept him happy for a little while.

Then began the waiting.  At this point we're used to appointments at Children's taking excessive amounts of time with lots of time waiting.  In this case, we were told 9:30, they had us down for 10:00.  They got a height and weight and then brought us back.  Interestingly, our little pipsqueak, was pretty much right on the upper range of being able to take the sedation medicine. 



Passing time while waiting to be sedated. 

They had a play doctor kit in the exam room that Bennett liked playing with while we waited.  Finally they were ready!  The nurse came back in and gave him the medicine.  And then we had to wait for him to fall asleep.  Bennett does not like being told to go to sleep, especially a couple of hours before his normal nap time!  Daddy and I took turns holding him and trying to keep him still.  We couldn't put him down because he would likely fall and hurt himself.  Plus I think he would have been really confused about what was happening.  In the end Chris lay down on the exam table and held him.  All in all, this took maybe 15 minutes.

Then it was time to transfer him to the room where they do the ECHOs.  He woke up slightly when he was transferred but he went right back to sleep.  The nurse stayed with him and Chris and I went to get some food.



He also did some coloring with his new Aquadoodle
that he got for his birthday.



Some people have commented that they wouldn't be able to/ wouldn't want to leave their child there, but with our experience at Children's, we've learned that when you get an opportunity to eat, take it.  Doesn't matter that it's only 11:00.  Go. Eat. 

When we got back to the room the person doing the ECHO was just wrapping up.  They had been able to get great pictures and a very thorough look at his heart.  Bennett was still sleeping, so they went ahead and did an EKG.  Then the cardiologist came in to talk to us.

It was awesome being able to talk and be able to give our full attention to the doctor rather than only have listening while we're trying to entertain Bennett and keep him from getting into everything.  And the news is... He's doing awesome!  The cardiologist commented that Bennett now has "mild regurgitation".  Wow!  Such a change from what we were hearing just before he was born.  They may not do an ECHO again next year, but that's ok because they were able to get such a thorough look this time.  And everything is looking great.  No reasons why he should be prevented from doing sports or other activities.  Future surgeries?  Maybe, but likely not until he's a teen/young adult, and possibly won't ever need anything else.

When we were done talking, and Bennett had been asleep a decent amount of nap time, the nurse removed the EKG stickers.  This woke Bennett up.  The nurse commented that coming out of sedation was similar to being drunk.  And that like with alcohol there are happy drunks and angry drunks, there was a similar range of outcomes when coming out of sedation.

Bennett is a happy drunk!  But  he also thought he could act like his normal self.  Um, sorry buddy.  We had to hold him to keep him from falling down or crashing in to things.  After he drank some milk we were free to go.

He also had his 2 year appointment with the pediatrician that afternoon.  We had time to kill between appointments so we stopped by Brandeis to visit Chris' co-workers.  The effects of the sedation hadn't worn off yet.  It was a struggle to restrain him!  This is a boy who doesn't like sitting still for very long!  But it was entertaining watching him try to walk.  But also a little scary since we had to keep such a close eye on him.



Asleep in the waiting room.



Then it was off to the pediatrician.  Bennett fell asleep again in the car.  He must have still been feeling the effects of the sedation because he didn't wake up when we took him out of the car.  Plus he slept in my arms while hanging in the (noisy) waiting room.  It was awesome!  I haven't been able to hold a sleeping Bennett in almost a year.  I hadn't realized how much I missed that.



Asleep in the exam room.



Then when we took him into the exam room he was still sleeping.  The nurses kept asking if he was ok- was there anything wrong with him?  Nope, just the after-effects of the sedation medication.  Understandable though, because I can imagine if I saw him lying on the table like this I would probably freak out a little as well.

When the doctor came in, we woke him up since we had to get an updated height.  They didn't like the measurement that we had gotten at Children's because it was very different from the last measurement that they had.

And then it was a pretty basic appointment, except we had to keep a closer eye on Bennett to keep him from falling from chairs and crashing into things.  But he was good about sitting still when he needed to be examined.  Pediatrician didn't express any concerns to us.  Yeah, Bennett has a speech delay, but he is making progress.  (We'll be so happy when he learns to communicate more!)