August 19, 2013

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 I have to start by saying that as unfortunate as this situation is I don’t think I have ever felt more gratitude in my life. Almost everytime I find myself going to the dark place of “how could this have happened to us” something comes up and shifts my perspective. From our house being next door to Chris’ parents which I thought was  convenient for simple things like needing a stick of butter (or more often in my case a glass of wine) to our amazing friends who have offered to watch Presley before we even ask, we truly could not be more fortunate.

This diagnosis changed every aspect of life as we knew it, our work, our homelife, our sense of security…everything…as of right now Riley is amazingly the most unchanged. She is completely content in this little 10×10 room, her vitals remain stable, they monitor everything SO closely charting her every blemish and bowel movement. We are still in the “waiting game” phase hence the lack of updates. Riley did have more blood drawn today some of which we won’t see results for 6 weeks so again like I said…waiting game.

Denise (Chris’ mom) came and stayed with Riley a couple of days last week so that I could go home and be with Presley. It gave Chris and I the chance to give Presley a better understanding of what is going on and what our new routine will be for a while. Presley started school on Thursday and LOVED it…her teachers said that she didn’t skip a beat and acted like she had been attending for months. On Friday Presley and I made a color coordinated calendar showing the days & nights that I will be home with her and the times I will be with Riley, having that visual reference has really seemed to help her over the last couple of days. She has been sleeping good at home for Chris which is fantastic because she is not typically easy to get to bed if Mom’s not around. The resilience and ability to adapt to change in toddlers is amazing; she has her moments but for the most part is handling all of this very well.

We are hoping to have donor match results this week to see if either myself, Chris or Presley are viable donors. We also should be meeting with the Bone Marrow transplant doctor this week and will hopefully have a better understanding of the next steps. Other than that we are to just continue to wash our hands and keep this little one infection free while we wait for transplant.

I want to thank everyone again…those who have called, watched Presley, shared our story with others and contributed with donations. Every one of these things helps tremendously. Please continue with the positive thoughts, prayers, etc… for little Riley and our family. xoxo

Any questions feel free to email me at rileyjanebrown@gmail.com

To make a donation visit: http://www.gofundme.com/3x0iig

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