Dru's first Grandma Camp

Dru's liver disease is progressing. And by progressing, I mean her health is deteriorating. 

Man, I hate that word. Deteriorating. 

It's depressing. 

At our last appointment, the nutritionist (who reminds me of a fairy godmother), changed Dru's formula recipe. It's more concentrated now so that she gets more calories in the same amount of oz. 

Dru has not adjusted well to this. In the last week she has only drank 8-10 oz during the day, then we pump what we can at night. For some reason this is causing her a lot of pain and she is awake all night, or will sleep fitfully if she's being held. It breaks my heart to hear her whimper in her sleep, I know it stresses Bill out too. Neither one of us is able to sleep much these days. Knowing this is a small window of our life is the only thing that keeps us going some nights. 

Dru is also having a hard time breathing. Her whole body moves with each breath, like it takes all her effort. The pressure on her lungs is getting greater. 

She's also scratching her face all the time. The bile in her blood makes her itchy, or maybe it's the bilirubin (I forget).

Needless to say, I am calling her doctor tomorrow to see what can be done about all of her discomfort. It never fails that all these issues become obvious AFTER we have left his office. 

Despite all these concerns we are optimistic still. I don't want to overlook them for the sake of positivity though. I think it's important to share the hard things we are facing as well as the good. 

And speaking of good, Dru was able to go to her first Grandma Camp this weekend. My mom does a themed camp for the grand kids one weekend every summer. This year it was Granmalot (Camelot-Monty Python style). The kids loved it. 

Dru slept through most of the first day. 

Then she was home with me and Dad til we went back on Saturday. 

My entire family went on an easy hike up to a small waterfall up the canyon near my parents' house. 

It was Dru's first hike. She really seemed to enjoy it. 

I really love that we keep trying to do normal things with Dru. And we make it a choice each day to be positive and just live day to day (sometimes nap to nap). I might be tired from restless nights, I might cry at a restaraunt when the sweet server asks us about her feeding tube, I might get overwhelmed at all the changes that are happening; BUT what I am experiencing is nothing compared to what Dru deals with everyday. And if she can still smile at me and fight to be happy, then how can I give any less to her?