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 […]Read more "Helping Hope Live On"
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 […]Read more "Heaven Did Send Hope"
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 […]Read more "Still Seeking Answers"
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. […]Read more "This Week Was a Poop Sandwich"
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 […]Read more "Attack of the Virus Vol. 3"
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 […]Read more "Happy Heart-Anniversary"
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 […]Read more "There is no Normal"
Hope has had a turbulent August and we can’t tell you how glad we are to turn over a new leaf and see fall come, and not for the PSLs you lunatics (that’s Pumpkin Spice Lattes for the unfamiliar). She’s never really gotten back to 100% after her Hand, Food & Mouth encounter – just […]Read more "Living On the Edge"
We are starting to think Hope doesn’t want to go to the lake. It seems that she gets stricken with some virus every time we try to go down. We had planned on spending a whole week at the lake relaxing and boating with our babe, but Miss Hope decided that was not going to […]Read more "Attack of the Virus Vol. 2"
Has it really been a whole year? John and I can’t believe it! We’ve only been home with her since January so we don’t feel ready for her to turn one and yet we couldn’t be more excited to have made it to this Magical Milestone! We feel like we really share this day with […]Read more "Celebrating a Magical Year"