4.18.23 Forward

We met with the palliative and hospice team yesterday. They were again so amazed that Aimee is coping with such pain as well as she is. The hospice nurse reminded us that in children the end is not usually a steady decline, it usually has steps down followed by improvement that doesn’t quite reach the previous high… over and over. This seems to be what we are seeing. 

At their advice, we increased her morphine doses and she has really woken up. Yesterday afternoon and today she is acting happy and present. Her intestines have woken up more, though not to a normal level. Apparently we need to be prepared to repeat this intense process over and over never knowing which decline will be the final one. These 2 weeks have been some of the most difficult days we have had in our lives thus far. Thank you for being with us in spirit through each one of your kindnesses, your prayers, and messages.

So, we are taking this one day at a time and trying to live life while also being prepared. It is a hard place to be. We have two plans in place for if things stay improved today or if they don’t… and so on for tomorrow. 

For now, there are these little gems moments to lock away in my heart. No matter what, I am so grateful for these treasures.