Friday, August 15, 2014
Reagan slept well last night. She woke up this morning well rested but gassy! With my assistance, she had a large dirty diaper and must have gotten some relief from that. She was pretty calm and laid back right afterward but got more goofy as the day went on. Lots of laughs all day. Sweet laughs during the day and on edge, near tears laughs tonight. Not sure if her tummy was plaguing her again or what, but then she had more gas and another poo diaper and seemed to feel better afterward. Unfortunately we also had some real tears tonight as well. Poor girl! We just can't seem to get her comfortable! She's on that new (old) formula, but so far no improvement. It's definitely messing with her bowels (and not in a good way) and we're still seeing hints of nausea here and there. We'll see. Her GI doc should be back next week and we'll discuss what to do then, and her palliative care team is trying to get another care conference together in the next week or two so we can get ALL of her doctors together to talk about our options. I'm still leaning toward the ketogenic diet, but we'll see. Hoping my girl can get on track and have a good weekend this weekend. It's been a long time without any "real" good days! Please continue to keep her in your prayers!