Friday, March 25, 2016


Grace, Nora and Lila
Since the dodgeball tournament, we have been busy.  On March 17th we flew to Port Charlotte, FL to hang out with my Aunt and Uncle.  The girls had never met them, and they welcomed us with open arms :-)  The girls got to swim, Matt and I got the chance to kayak up the canals, and their view from their yard is amazing!  Thank you Auntie Irene and Uncle Chuck for having us!
view from yard

pool time!

Lila began intensive physical therapy on Monday this week. She is exhausted, but has been giving it her all, as usual :-)  Sylwia keeps her laughing and smiling all day long. She has been walking independently for 2 hours a day, and then strengthening her muscles the other two hours a day.  I have a video, but it is too large to transfer from my phone.  I will try to get another this afternoon.

The girls love our condo we are staying at...pool, park, and pond with turtles and a gator in it!  Lots of friends to swim with at the pool and play at the park with :-)

I haven't been to Florida since I was a teenager.  Here a few things I have noticed:
1.  There are some pretty cool birds here.
2.  People drive like the world is ending, hence the fact that we have seen a ton of car accidents.
3.  There are alligators in every pond you come to.
4.  A lot of people like Florida, especially the snowbirds.
5.  There are people here from:
New Jersey, New York, Pennsylvania, Connecticut, Massachusetts, Illinois, Ohio, Ontario Canada, and Colorado.  At least this is whom we have run into thus far.  Crazy!
6.  People!  People!  People!  Everywhere...
7.  Just like in CA around Disney, it is quite dirty and rough.  Nevertheless, we were able to venture out yesterday and did see some pretty nice areas of Orlando/Kissimmee.
8.  Outlet malls are everywhere!  People are shopping as if they have never seen a store before!  
9.  There are some pretty sunsets here :-)

10.  Last but not is very humid here!  Oh, and we had an amazing thunderstorm last great :-)

As for our weekend, we are coloring easter Eggs, heading to Clearwater to meet Winter the dolphin and have a bit of beach time, attending a local Easter Egg Hunt, and resting.  Happy Easter to you all!!!!

Friday, March 4, 2016

Dodgeball 2016!!!!

2016 Dodgeball...the best event yet!!!
Congrats to Men in Tutu's!!  First place!

This was our 5th year raising funds for Lila's treatments and therapies, and the support and love felt
this year was above and beyond!  It is amazing what can happen when you give back, as our funds raised have doubled two years in a row.  This years final total is $15,766, of which will be divided evenly between Lila, Lennah and Scarlett.

Some of you came out with outstanding costumes!  Some of you came out with your beer drinking arms in order!  Some of you came out with strong, supportive hugs!  Some of you came out with awesome posters and masks...typical athletic supporters!  Some of you came out to lend a hand for the day!  Some of you offered your business services!  Some of you came for lunch and some good laughs!

Any which way you look at it, the event would not have been a success without each and every one of you.  From the bottom of our hearts, I scream from the mountain tops....

This journey with Lila has completely changed our perspective on life.  I know this sounds cliche, but the small stuff really truly does not matter.  Lila has taught us to appreciate each and every little milestone, enjoy spending time together as a family, not to worry about the amount of money we have (or don't have), to look at experiences/therapies/medical treatments as opportunities for growth, and smile at the small stuff.  She gets up and faces everyday with a smile, as her joints hurt, neck and shoulders hurt, she can't get her words out fast enough and exhibits such patience.  Lila walks with her quad canes and falls often...she just gets right back up and keeps moving along.  Lila has the best peers ever...they wait for her to get a full sentence out, encourage her to answer questions, and teach her that she is capable of doing exactly what they can do.  In her eyes, her life is great and she is no different than anyone else.  Her life is full of laughter, singing, performing, dancing, reading, swinging, biking, and playing with her friends, just like any other kid.

I would like to encourage you all to spend as much time with your kids as possible, appreciate your friendships, value everyone for who they are and not for what you think they should be, and when you fall...get back up and keep on going!