Friday, January 15, 2016

Welcome 2016!

We are excited at the thought of a new year, with new possibilities ahead.  In order to make those possibilities happen, we are hosting our 5th annual dodgeball tournament!  Lots of fun ahead...

If you are interested in playing, participating, donating, or volunteering please let us know.  If you are looking to sign up a team or donate, there is a button at the bottom of this page that says "donate"...this is where you pay to sign your team up for the tournament.

An update on Lila.....

Lila is now 9 1/2 years old.  She is in 3rd grade with her typical peers, and has really matured a lot this year.  She is walking with quad canes all over the school, grocery store (unless she is pushing the cart all over the store), house and church.  She uses her walker at places like the airport, hiking, park, and longer distances on the school grounds, and her cerebral palsy does not slow her down :-)

Lila continues to amaze us as she reads her chapter books, corrects her sister when she hears her get stuck on a word, knows who the president of the United States is, talks about the United States and going to "Yew Nork", and sings songs about the 7 continents and inferring information in a book.  She is just a sponge for information right now :-)  Such a fun time!  She is also very proud of herself as she learns more about multiplication, and corrects her peers when they are having trouble reading. She is an amazing kid, who deserves love, happiness, and acceptance from she gives this to everyone she encounters.
Lila LOVES music!  She loves to dance and sing more than anything else in this world.  She loves to wear dresses and look pretty, and craves play dates with her friends.  Lila's friends are so good to her and really feel like she can do everything they can.

This year brings a whole new realm of therapies for Lila.  We are starting scalp acupuncture once a week, and are going to intensive physical therapy in Florida in March/April for 3 weeks, neither of which are covered by insurance.  We are going to FL to see this specific therapist who really focuses on strength and walking.  He has gotten Lila so far in the past, and we look forward to the progress she will make this time around.  Although this trip is exciting, it is going to cost about $9000 total.  The dodgeball tournament is our main fundraiser each year, so we look forward to being able to lighten some of that financial burden.

The best part of this trip is that we will get to see my Uncle, Aunt and cousins, whom have never met Matt and the girls.  We will do this a couple of days before we start our three weeks of therapy, and are very excited for this connection :-)

This year is not all about treatments for Lila, but fun as well.  Next week we begin skiing every Saturday morning for 8-10 weeks at this local program called Sky Tavern.  It is a non-profit and is made up of all volunteers and parent support.  Nora is counting down the days before she can ski, and Lila is quite apprehensive.  This will be amazing for Lila's core strength, as she will be on a bi-ski with an instructor behind her guiding the ski.  Matt trained last weekend to be part of the special needs volunteer program, and decided to take the bi-ski up the lift and try to guide it down the hill.  Thank goodness nobody was in the sled because he said it was like an episode of "Jackass"!  I wish I could have seen it :-)  He ran the sled into the ski lift pole, and fell more than he has in many years!  By the end of the sessions, he will be a pro I am sure, and will be so happy to be able to ski with his little girl (who most dr.'s thought wouldn't even walk or talk)!  We are so blessed!

Happy New Year!

1 comment:

  1. I am so glad to hear how Lila has progressed! She is blessed to have parents who are willing to go above and beyond for her well being. Hugs!!