Helping Hope Live On

First, John and I want to publicly thank and acknowledge all the individuals who so graciously and freely contributed their time, talent, energy, efforts, brainstorming, tears, clean up, transfer and sheer physical exhaustion into planning, helping and successfully pulling off Hope’s Celebration of Life and subsequent transfer of her beautiful belongings to her final viewing […]

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Heaven Did Send Hope

Hope’s story has always been full of twists and turns. She’s been a one-in-a-million, unique little lady-unicorn right from the start. I hope everyone reading this takes a deep breath with me now. Hope is not going to make it. She is in heart failure, and that has brought about multiple system organ failure complicated […]

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Still Seeking Answers

We came in To the ER on July 28th with what we thought was a fever and potential rejection. Since then, we’ve chased more questions and found each one met with more confusion. John and I know there are so many people who love our family and want an update, but this has been a […]

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This Week Was a Poop Sandwich

Let’s pick up where we left off in our last update: We were admitted for a fever and infection last week, putting the viability of her procedure in question.  We were able to come home late Friday and we spent the weekend resting and recovering from a lovely two-day stay at Hotel Children’s last week. […]

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Attack of the Virus Vol. 3

Hope has had a complicated few weeks. She has been fighting off infections and we received a new diagnosis because, hey, we don’t have enough to deal with already, right? Let’s start with the infections. Hope continues to struggle with a condition called neutropenia, (click link for more info – noo-troe-PEE-nee-uh – is an abnormally […]

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Happy Heart-Anniversary

The last 24 hours have been an emotional ride down memory lane. Right about this time, one year ago we were walking into this scene – seeing our little girl for the first time in over 13 hours. I’ll never forget this image. We weren’t sure we were in the right room; this little girl […]

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There is no Normal

When the transplant team told us to forget the notion of normal, we really couldn’t comprehend the way this simple statement would impact every part of our lives.  Forget normal bonding with your child.  Forget normal stage progression for your child.  Forget normal level of interaction with a medical team for your child.  Even something […]

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