March 16, 2024
2 Years
What a Birthday week! So much emotion leading into it. Hard to put into words that can be understood without living it. So much gratitude to be celebrating 17 with Tate. But so much grieving too for so many lost years. We are too close to 18. With that comes big changes in the medical world, and a farewell to a childhood that looked nothing like we wanted. That Tate didn’t get to live. My heart is happy, but it hurts too. So….we are happy to say despite our last minute trip cancel to CO Springs, we had a great time celebrating Tate and although we are missing TJ and Meg, we have loved having Drew home, filling out our family a bit. Thank you to so many for the Birthday wishes through cards and FB messages, packages and texts. We feel so much love and gratitude for you all.
Medical update: IT pump (implanted pain pump,) despite the rocky start has become a huge gift! We are so so thankful for it! Tate is walking better than she has in ages. It doesn’t erase the pain, but has improved Tates quality of life tremendously! We saw pain clinic on Friday, and due to increased pain from disease, they were able to increase her basal (constant) rate of pain medication that Tatum receives which is exactly why we went this route-to keep up with Tates ever changing needs.
What IS tricky to observe from the outside is what you see is not really what IS. Tate looks great because she’s moving better. Tate has been feeling lousy in other ways and her body has been showing us it’s unhappy through swelling, rashes, fatigue, new pain, neuro symptoms, etc. Hematology labs shifted dramatically this past week and rheumatology labs on Friday confirmed that her lupus (esq) disease is no longer responding to her current medication regimen and is progressing in ways we haven’t seen before in addition to old stuff getting ugly again. We were hoping to have med decisions made and switched by yesterday, but as we’re so good at it, we’re still…waiting. Even with a med switch, they take a good 6 weeks to know if it’s the right one. So lots of waiting! There’s always a lot of players to weigh in.
All our weeks are filled with multiple appointments and therapies. We are working on adding more non medical as Tate has the stamina and always trying to put fun things on the calendar to work towards. As always, we are grateful for the love and friendship and prayers.