Saturday, January 1, 2011

2011 - Promise, Excitement, Strength!

Welcome to the New Year of 2011!  This year will bring great change and strength to our family, for which we are grateful.

Let me start at the beginning, for those of you who are not name is Maria and my husband is Matt.  In 2006 we gave birth to our first little girl, Lila, and she was so perfect!  Even though we saw perfection, we had lots of trouble with her diet, acid reflux, lots of crying, and lack of forward progress towards milestones within her first year.  

At 10 months we realized that Lila was not growing, she was only 13 lbs. 2 oz., coming to the conclusion that she has celiac disease and had not been getting the right nutrition.  So, upon change of diet, she grew 1 lb. a month for 10 months straight!  Very exciting for us, nevertheless she had not gotten stronger or met any more of her milestones that we had already passed.  

At the age of 12 months, we began working with Nevada Early Intervention to for physical therapy and developmental support.  They were amazing!  Our team of specialists led us to the right doctors in the area to see if we could get any closer to finding out what the root of Lila's issues were.  After every test you can think of (MRI's, EEg's, nerve conduction tests, syndrome blood work, etc.) our neurologist could not figure her out.  When she was 2 1/2 he diagnosed her with hypotonic (low muscle tone) cerebral palsy (prefacing that statement with, "for lack of any other name").  This was based on the fact that she could not walk unassisted, her cognitive level was a bit behind the average for her age, and she only had a handful of words.

Lila at age 1
This blog will be about Lila and her journey over the past 4 1/2 years, the struggles, the laughter, her life with cerebral palsy (CP).  This year also brings hope as we begin our fundraising efforts towards providing Lila with stem cell therapy.  We have yet to know if we can use Nora's (Lila's sister) cord blood or will have to use donated umbilical cord cells...either way the results over the past 12-15 years are proven to be positive, be it small or large.  Here is a link to a 60 minutes episode that has inspired us over the past year.
Thank you all for your support and many blessings to you all in this new year!

1 comment:

  1. Maria and Matt: thanks so much for including us on Lila's journey. We will be there every step of the way and will do whatever we can to help. Love to you all,