January 3, 2024
1 Year +312
As I see that second number (312) creeping closer once again to another year mark, I feel both sadness that things STILL aren’t great and also gratitude that Tate is growing close to two years post transplant. With a new year now in full swing, we HOPE for a better year. No brain tumors, less hospitalizations, less disease progression and more healthy normalcy. But in all things we try to give thanks. Tate’s goal for the New Year is to “Get stronger by trying to move more.” This girl doesn’t give up.
We were able to say for one day this year, Jan 1st, that “Tatum hasn’t had any medical yet this year.” Actually, we had several days on our own which is always nice. We’re now back in full swing with nurse visits, labs, PT, OT, telehealth and in person visits this week.
Medically, outside of the normal, not much has happened. I did receive a call from Tate’s GI nurse apologizing for the lack of response the day prior and letting me know that she was back and a beloved GI provider was available if needed. I appreciated that so very much. We are so grateful to have teams that know Tate and our family so well. Tates labs were repeated and looked better. The weight loss has stopped and Tate is now tolerating the TPN well. It runs for 12 hrs during the night and was the right call by our dear GI Dr. Tate seems to have a little more energy and clearly was needing the additional nutrition. We fought TPN pretty hard for months. An additional significant weight drop made it no longer optional once Tate was inpatient. What originally felt terrible, now brings a little sense of relief. It removes a bit of the worry and responsibility that Tate is getting what she needs now and that she’ll be healthy enough ti fight through another serious illness. TPN is a last resort nutritionally, and not where we wanted to be, but with time comes a little gratitude. We work hard to find the silver lining in all things.
We did run away locally for a couple days. Tim got a couple days off which was so nice to have some uninterrupted family time. We rung in the New Year celebrating Tim and my 24 year anniversary. Actually, we were sleeping by 10:30. We did puzzles, watched movies, played games, witnessed beautiful sunrises and took some long walks. After a crazy December, it was the perfect way to say good riddance to 2023.
Happy New Year!