Saturday, March 9, 2013

What we've been up to.

Besides turning 5, we have had a busy few months.  I always think of winter as our down time, a time to catch up on rest while we hide in the house from the cold and snow.  I'm not sure why I think that though, because I don't think that has happened the last few years.

Sam and I are still traveling to Boston every eight weeks.  For about the last year we have been making these trips all in one day.

Our morning normally starts sometime between 3:30 and 4 am with a drive from Appleton to Milwaukee.  With more and more airlines pulling out of our local airport since the beginning of the recession it is just not practical or cost effective to fly direct from Appleton.  The drive takes us just over two hours.  We fly from Milwaukee to Boston and usually arrive right before lunch time.

We have our appointment at the hospital around 1, pick up a two month supply of Omegaven from the pharmacy, and then head back to the airport.  Occasionally we have a few hours to kill in the afternoon and we spend that time hanging out in the hospital lobby or the airport.

We land back in Milwaukee late in the evening and make the drive back home, normally arriving about 10:30 PM.

It's an exhausting day, but getting everything out of the way in one day has several advantages.  It is actually easier; instead of being exhausted for three days (travel day to Boston, day in Boston, travel day home) we are both wiped out for one day but then get to sleep in our own beds.  It is much less expensive; we are not staying in a hotel or checking luggage on the way to Boston.  In general it is just less disruptive to life; less days of work missed for me and less days of school missed for Sam.

At the end of February, however, I had the opportunity to combine a business trip with Sam's appointment travel.  This gave us a few extra days in the Northeast.  Our trip started out with snowstorm which prevented us from traveling when we were supposed to and shifted all of our plans to include a weekend stay.  It did give us the opportunity to meet up with some of our friends.

We were staying in Nashua, NH (about 45 minutes north of Boston) where my employer has an office.  We drove down to Mystic, CT on the weekend and met up with Scott Shutka from New York at Mystic Aquarium.  Scott's son Brad also has Microvillus Inclusion Disease and our families stay in close contact to share ideas and offer support to each other.

Brad and Sam, along with Brad's brother Jackson, had a blast at the aquarium together.

Sammy had a close encounter with a Beluga whale and for days only talked about the "Booger Whale" to everyone who would listen. 
Jackson and Sam really hit it off, which was a relief because the last time we spent some time with the Shutka family I think Sam terrorized Jackson. 
You would have thought these two are professional comedians they way they were hamming it up after dinner. 

The next day Sam and I make a quick trip up to Maine to meet Anna Cyr. Anna's adult daughters are both affected by Microvillus Inclusion Disease.  Mallory is currently living and going to school in Boston and Maisy is studying abroad in London.  What an inspiration their family has been for us over the last few years!
Sam also got to spend some time at the office with me and made everyone at our New Hampshire location fall in love with him.

So, besides traveling, what else have we been up to that has prevented us from updating regularly?  Well the holidays were a busy time.  Four Christmas celebrations were enough for me.  Of course the holidays always makes us reflect on how lucky we are to have Sam home with us. We have been so fortunate to have spent so little time in the hospital this last year.

 Our elf had a naughty streak in him this year and even pooped on Sam's pillow one night...

Ryan's school held a fundraiser for Sam and raised $500 selling candy canes for $0.25 each!!

 Speaking of fundraisers, the Kaukauna High School Civic Engagement group had another fundraiser for Sam at Halloween.

 Sam went to the school to deliver a thank you card personally thank them for all of the hard work they putting into raising money to help him contine to travel to Boston.

 We have spent a few snowy days this winter at the Building For Kids in Appleton.  Sam never tires of the firetruck.

We also had cousins Everett and Harrison spend a few days with us, and everyone enjoyed camping out on the floor.

Uncle Todd and Aunt Tanya treated us to a trip to the Shrine Circus when we returned their children unscathed.  This was the first trip to the circus for both Sam and Ryan.

Sam REALLY loved the motorcycle stunts.  I literally have never seen him so excited in his entire life.  He tends to have an attraction to danger, so I am pretty sure we are headed for trouble there.

Sam also got to see, and was amazed by, his first 3D movie

I could go on for hours, but really you get the picture.  There is never a dull moment and we are just busy enjoying time as a family.  One last thing though is this...

 Sam and Ryan have started taking Jiu Jitsu.  Ryan started first and I was a little hesitant to let Sam because of his central line, but he really seems to enjoy himself and hopefully it will help teach him some discipline.

Our little warrior.

Wednesday, March 6, 2013

Turning 5

As I sit down to write this post tonight, I remembering back to what I was doing exactly 5 years ago at this moment.  Deb and I were all set to close on our first house the next day.  I got Ryan into bed and sat down to watch some TV when I got that phone call.  Deb was at work, but was having contractions.  We had so many false alarms that she decided to wait it out and finish her shift at work.  I don't think either of us really thought that we were less than 12 hours away from our 2nd son being born.

Every year it is amazing to think back and remember everything that our family has experienced over the last 5 years.  Such a roller coaster ride Sam has brought to our life.  Being told that your child will not live to be 2 years old changes your life in many ways.  

For us it was a call to action, a challenge of sorts, and it wasn't one that we were going to give up easily on.  People meet us, hear our story, and comment on how strong we are, how amazing we are, and how we just seem to have it so together.  We put on a good show.  We are not especially strong, or amazing.  We certainly don't have it all together.  We have just refused to give up from day one, We fight for our child everyday.  We never let our challenges interfere with giving Sam every opportunity and life experience that any other child his age would have. 

With the help of so many people in our families and community, Sam has grown into quite the amazing 5 year old.  He is sweet, sensitive, well adjusted, and happy.  He embraces our frequent trips to Boston and tackles each one with a sense of adventure.

While we can't know for certain what the future may hold for Sam, it is definitely looking bright.  He has had a very healthy year and has make huge progress on his speech and language.  Some days it's easy to forget what a struggle other days can be.  We are reminded by the other children in our "medically fragile" family how truly lucky we are to be spending as much time as we are at home, issue free. 
Another summer is almost upon us which will mean another season of camping, swimming, amusement parks, and dreaming big and living life.
None of that would be possible without the man pictured above with Sam.  We owe so much to Dr. Puder for what he has done for Sam and so many other kids like Sam.