Search results for ‘Ava’
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Quint Analysis Results are in. “First step” in a new journey…whole exome sequencing.
Yesterday was an interesting and exhausting day. As you may remember, we were not able to get whole genome sequencing approved through our insurance company for all five...
Waiting for the meeting to start.
As I sit and wait for our geneticist and our genetic counselor to enter the room, I am sick to my stomach. There are so many thoughts going...
Szajnuk Update. The journey continues. And, I am very scared.
Dear Family and Friends, I started RUN for my three undiagnosed children. So, I apologize for blogging on it about myself lately. I want to share my journey...
My 42nd birthday. A much better birthday than last year.
Today is my 42nd birthday. It brought me back to where I was last year on my 41st birthday. I had gone to California to be by myself...
Utah’s Rare Disease Day Events
Utah’s 2015 Rare Disease Day is going to be BIG this year, and we’d love for you to be a part of it. 🙂 February 27, 2015 —...
Traveling with oxygen
Today I am flying on an airplane with Justin for a corporate trip. It is an opportunity of a lifetime! And, I feel truly blessed to be included....
Lucy’s pain
It breaks my heart to have my three year old daughter continuously wake up during the night crying that her leg hurts. She tells me that her leg...
EoE diagnosed again in our family
Ava and I have now both been diagnosed with EoE, Eosinophilic Esophagitis. Since we do not know what the cause is of my EoE, the doctor ordered a...
Hearing the words “Unknown Progressive Disease”
I am now officially very scared. My team of doctors have admitted that they do not know what is happening right now. They called me “a puzzle” yesterday....
Goodbye 2014!
As I sit at my computer on New Year’s Eve, I realize that I am ready for 2014 to end. Goodbye! See ya! Not looking back. No way....