1 Year + 217
1 Year +217
Wow! Thank You for sharing and supporting and loving us through this. Tate’s page grew tremendously this past week because of your willingness to share her story. I received many messages with ideas and suggestions that I’m still working through. And above all, there are that many more praying for her. Thank you!
Mostly through the weekend, we processed and sat on what we knew, wanting to make decisions on how to move forward from a place of logic rather than emotion. This helped to gain perspective, but not being actively “working“ towards something also gives you time to feel, which is hard. So I didn’t really start sending emails until Sunday evening. It’s only Tuesday, and logically I shouldn’t expect responses yet, but it already feels like an eternity.
Tate’s pain continues to worsen. I’m giving her more frequent pain med boluses on top of her regular high doses of pain medications. That unfortunately causes other side effects we’re having to work through. It’s crazy that a two year old memory popped up today after our first week on hospice and Tate was dealing with the same symptoms. It honestly took me for an emotional loop. But it’s too long to share today.
We were told the hospital is “full” so we are on a day by day wait for the pump trial. It’s now been weeks of waiting, which Is really frustrating. The mood in general has been pretty low. But we are hoping for some communication from both Tate’s CO team yet this week as well as from some of the individuals I’ve reached out to outside of CO.
Huge mood lifter today was my sister and her husband were in town for 1/2 a day. We checked off a fun item on Tates list-The Butterfly pavilion. I was too busy enjoying the company to take more than one picture. Tate was really wanting a butterfly to land on her, and she got her wish! AND Tate made caramel apple slices in Ot this morning with Meg. Tatum pushed hard today and I saw more smiles. She’s taking more and more coaxing to get her up to do even the things that I know she loves. It’s getting harder for her to push through the yuck .