Monday, March 3, 2014
Terrie and Ethan made that happen by sharing their story with Craig and Mauri Gandy.
They have been an amazing support for this disorder and have assisted in getting a huge amount of awareness out for everyone.
The struggles in this life and the challenges we face as parents are immense. Often times we forget to give ourselves the appreciation we deserves as parents.
We forget to make time to remember we have to breathe and walk out of a room at times to gather our thoughts. Often we are hard on ourselves and spend most of our nights worrying.
From wondering who will take our places should something happen to us, to staying awake nights on end when our loved one is sick it is a life we often spend in constant stress.
I want to thank all the families that have believed in me many years ago when so many were against us. For us this fight has always been about answers and education. I am honored to say today I feel strongly those visions are close at hand and it is because of the amazing families that fought right along asking for a voice. For you families it has been worth every minute of this journey.
I always try to see some light even in the midst of the darkness. Many times it is the families fighting the same battles that I find that light in.
For that I am eternally grateful
Monday, February 17, 2014
Sunday, February 16, 2014
Monday, February 3, 2014
Since Noah's surgery things have been on highs and lows.
His healing seemed to go quickly although after a few weeks I wanted to pull my hair out and regretted it I am very glad We went through with it now.
However We are not out of the woods yet. As with all special needs mom's I always see a new obstacle in the horizon.
Noah still is challenged by brittle bones. Recently rushed to the E.R for possible hairline fractures in the lower ribs from his scoliosis vest.
We have yet to find any fractures but he remains fussy and cringing in pain.
We can only pray This is going to pass and there is nothing too serious going on for him
On a great note. His communication is doing amazing. Every day he teaches me new words he is working on. And continues to smile No matter What he goes through.
He is the complete definition of a warrior.!
Tuesday, December 24, 2013
Saturday, November 16, 2013
After a long recovery at Arnold Palmer Noah is being released. I am so glad Noah has been so strong throughout this entire deal. I was so very worried about this all for weeks and once again Noah had kicked Schizencephaly in the butt!
Smiley boy is happy to be heading home after three days of pain and hospital. Mommy is very very happy.