Post BMT day 254
+254
Thank you for all the supportive messages. So so thankful for our Tribe!
This week was a little rough on Tate. Pain continues to progress. Eating and drinking is difficult. We continue to run iv fluids in addition to the tpn/lipids and enteral feeds. LOTS of sleeping…18 and 20 hour days this week.
Yesterday we had a two hour appointment with rheumatology. This is the same rheumatologist that has been our medical everything since Tate was 8. She is THE reason (by Gods grace) that Tate is with us and that we found the Mosaic Trisomy 8. We are now getting reestablished again post transplant. The hope was we wouldn’t need rheum again but if we have to land somewhere, we’re so thankful it’s with Dr. Moore. Essentially she’s starting over with testing to figure out why Tates knees and ankle are swollen and why her joints are so painful. Early labs yesterday are showing continued inflammation. We were hoping that the last blood infection was the cause of elevated markers. Not the case. We are praying for direction that will lead to relief and a better quality of life for Tatum. This will be the pattern as we work through the various specialists to see what is left and categorize symptoms with the various departments/issues.
Tate has also experienced more tremors this week. I know I’ve yet to accept that this movement disorder is part of her world when it’s a bit of a gut punch every time it rears it’s head. Thankful though that it’s currently better controlled with meds that do double duty for her migraines. Trying hard to always sit in the positive.
Prayers for Kody and his mama Brooke. They’re back in New York fighting the ugly beast that is relapsed neuroblastoma. Thanking God that MSK/NY wasn’t ready to give up on him when he still wants to fight. Carrying you in prayer and Love Kody and Brooke