Time has obviously passed quickly since last posting. So much has changed!! A little over 4 years ago we were able to buy a home that functions well for our family. The builder had a feeling to build the home so it would be wheelchair accessible. When we came around to buy the home, he then realized why. There are no stairs going into the home, so Emylie can roll in and out as she pleases. We have loved the new area we live in and all the wonderful people we have the opportunity of knowing.
Just before moving out of my parents home, my mother was diagnosed with ALS. It was so hard moving away from her. We offered to stay with my parents and help my mom however she needed. My mom wouldn't have it. She reassured me that everything happens when it is supposed to and that she and my dad would be ok. My mother gracefully handled the challenge she was given and passed away not quit two years from being diagnosed, in August of 2014. I miss her every day. Living without my mother has been hard! She was my best friend and a source of strength and peace. I know she is still close by and helping my family and I, in many ways I am sure I don't even realize.
Our family grew when we had a little boy in 2013. Holy smokes having a son as a little side kick is awesome!! The girls all love him so much and for Emylie to become a big sister was pretty special. She wore her "Awesome Big Sister" shirt with a big grin and as often as she could. He definitely has a his role in our family, and I can see the little piece of why each member of our family needed him to join our lives.
Emylie has been doing well, aside from some hiccups along the way. We moved into our home and within a few days Emylie was admitted to the hospital for about a week. It was her first Christmas in the hospital. She stayed out of the hospital until August 2015 when she seemed to be having neurological issues which was first thought to be results of a stroke. She had her shunt revised and we took her home to recover. Over the following months little odd things kept occurring but not enough at the same time or severe enough to warrant intervention, until the day after Christmas when I noticed her shunt was leaking. Super strange because her incision from August had healed and at first the neurosurgeon in the ER thought I was up in the night but then his findings confirmed my story and suspicions. She was immediately admitted with surgery the following morning to remove her shunt and place an EVD (External Ventricular Drain) for a couple weeks until the infection cleared and a new shunt could be placed. Thankfully, Emylie pulled through each of these experiences and fought back to get to where she was before entering the hospital and soaring higher as she continues to beat the odds.
