Well, we've had an eventful weekend. Sarah's had some good and some tough periods. Her yellow color isn't improving and I can tell she's struggling with a high general level of fatigue and unwell feeling. I took Sam to his two basketball games and one birthday party this weekend, and we also decorated our Christmas tree together as a family on Saturday. The boys and I unpacked the ornaments and Sarah helped select the ones that we wanted on the tree this year. On Sunday we spent quite a bit of time buying a bunk bed for the boys and assembling it in Ben's upstairs room. That frees up Sam's downstairs room for Sarah to sleep in since the stairs have been getting pretty daunting for her to climb, especially in the evenings when she's already tired. It'll take some getting used to for Ben and Sam, but night #1 worked out ok even if Sam did take a long time to fall asleep.
I think Sarah's bilirubin is probably still sky high and that means her liver is likely not doing what it is supposed to, so I'm very eager to discuss with her onc what our plan is for this week. I'll be pushing for speed - very much not liking the trend and the pace of how she's feeling.
Ben seems to be holding up well, although he's definitely affected and "gets" where we are. He was so excited about the "cool" new bunkbed but then said he was sad at the same time because he realized why it was necessary for us to get it.
Well, enough for now - I'll post when we have some more news.
5 comments:
Hanging on your every word, Alan. Praying every moment. You are so strong and such a wonderful husband and father.
Praying every day, my prayers for you to continue to be strong, prayers for understanding to both of those sweet boys, and tons of prayers and positive thoughts for Sarah.
Alan and Sarah, I needed to send you a note to just tell you that we are praying for all of you. You are amazing people who are cared and loved by many. You both have touched so many in ways that you can't imagine.
I am praying for you - we have never met, nor most likely never will. I happened by your family's blog by accident about a month ago as a friend is going through something similar. I have been following ever since and send my thoughts and prayers.
Here's what I learned from having kids sleep together in my house: The sleeping together will get easier. They adjust, and they do stay up a bit longer sometimes. But its also some good bonding, too! Alan, thank you so much for all your updates. HUGS, HUGS, HUGS to Sarah!
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