Archive for February, 2015

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Hands. They are really important when raising three young children.

February 21, 2015 11:20 pm

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Today. I really feel the pain in my hands. I put off going to the grocery store for a few days. I was dreading the errand. I usually...

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Rare Disease Day in Utah is February 28, 2015!

February 21, 2015 10:38 pm

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Megan, Katie and Lucy celebrate! It’s official! February 28th, 2015 is Rare Disease Day in Utah!

Hard drive arrived today!

February 17, 2015 11:19 pm

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The hard drive arrived today from our whole exome sequencing! I have waited over a year for this moment! Thank you to my team in Wisconsin!! You are...

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Carcinoid is still an option but insurance company is denying requested tests?!?!

February 12, 2015 9:31 pm

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This was the email I opened this morning from one of my specialists: “Thank you for the updates — how are you doing today?  I do not think...

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Update on Harlie Valdez. She is still at Primary Children’s Hospital

February 12, 2015 12:23 am

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I visited Harlie and Stephanie yesterday. I am so very concerned for Harlie. I brought her a few fun things to do to take her mind of off...

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Quint Analysis Results are in. “First step” in a new journey…whole exome sequencing.

February 6, 2015 1:52 am

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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...

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Waiting for the meeting to start.

February 6, 2015 12:06 am

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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...

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Whole Exome Sequencing Results Are In!

February 3, 2015 12:52 am

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We just got the call from our genetic team back in Wisconsin.  They want us there ASAP. Justin and I are flying tomorrow. Meeting on Wednesday. Flying back...

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