March 6, 2026
Such a busy week! We brought in several new people from the hospice team including music therapy and social work and Tate’s nurse visit. Next week adds in massage therapy too. We had appointments at main to see hem onc- she really needs infusions due to being anemic, and hem thrombosis clinic. Her Dr. there hasn’t seen blood clots like this ever. No surprise. Another care conference is being organized. Her IT pump complicates things. Currently the belief is her risk of bleeding is less than her risk from clots, so her blood thinner was increased.
Today at North campus, Tate received many small injections of Botox in her face, scalp and neck. We’re hoping it helps with her migraines. Keira’s been getting this for years now and has fairly good success. Pringie and Amanda made it all feel a little more familiar for Tate.
We’ve had telehealth with special care and rheumatology, therapies and phone appointments too. Tate has a combination procedure coming up under sedation for hip/knee injections, a GJ exchange and a spinal tap to check on her cns inflammation .
Next week is Birthday week and just as busy with regular appointments and 3 days of ivig added on. Tate’s Birthday will once again be spent at the hospital-but she gets to go home that evening. Our hospital family always makes her feel loved.
My head is honestly swimming yet. On Tates better days, I feel like this couldn’t possibly be where we are. On her worse days I’m worried we won’t see a better day again. We will adapt and find yet another new normal somewhere in the middle. Thank you for all the love.