Adoring Ava

For anyone who wants to check in on Ava, we thought this would be an easy way to tell her story...

Sunday, October 9, 2011

Am I cute or what?!

Posted by Julie, an official blogger... at 6:38 PM

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Ava has been diagnosed with Congenital Amegakaryocytic Thrombocytopenia

...otherwise known as CAMT, Ava's bone marrow lacks megakaryocytes which produce platelets for clotting. The only treatment for this disease is a bone marrow transplant

Meet her match...

Our very own Audrey Mae is a match for Ava! Though we still have a long and scary road ahead, finding out that Audrey is a match has been the one positive so far! The fact that Ava will be getting her marrow from her one and only sister is not only beautiful, but the answer to our prayers!

About Me

Julie, an official blogger...: NEVER in a million years did I ever think I would have a blog! Not only can I not write, but I have horrible anxiety over it! Besides, I have nothing really interesting to say. Back in the day, before children, I was interesting. I had a job, I talked to big people, and was fun. In 2005, I got married to Drew and became a step mom to his two wonderful boys, Brennan & Casey. In 2006, we welcomed a little girl Audrey and another little girl, Ava, in 2010! I now stay home and suffer from mushy brain, otherwise known as momnesia. My days are run by my sweet and sassy 4 yr old, and my demanding but delicious 8 month old. Up until a couple months ago, I was your average mama enjoying (and not enjoying) raising my girls...that was until our world was turned upside down. After being diagnosed with a rare bone marrow disease, our 8 month old will be undergoing a bone marrow transplant at Johns Hopkins. Now I have a reason to write, a reason to start this blog. This is for all of our wonderful family and friends that want daily updates, and also a way to express our own thoughts and emotions along the way...this is Ava's journey.

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Beads of Courage

Beads of Courage is an organization where beads are given to patients to help record and tell their stories. These beads honor the challenging journey that children take during treatments for cancer and other serious illnesses. Each bead represents certain procedures, blood draws, tests, transfusions, overnight stays, chemo, surgeries, etc...

The collection of the beads becomes a symbol of their courage. Every morning, the nurses give Ava her beads from her previous day and overnight experience. I just keep on stringing them in order from her first visit ever to Hopkins!!

Ava's beads of courage

Sunday, October 9, 2011

Am I cute or what?!

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