June 25, 2026
It’s IVIG day 2 of 3. A lot of the same old minus Tate’s increased pain. It’s been a bugger, but Tate manages the way she does everything, by plowing right through while throwing out sunshine whenever she can find some. I felt so much gratitude walking back into Children’s with a team that knows and loves Tate-and our family. The care and love are balm on open wounds-because the adult medical care outside of CHC walls has been brutal.
It’s been another long week. Keira was admitted again on Sunday. We’re back home now and trying to continue to piece together something outpatient to hopefully keep her out of the hospital. They love to admit her which quickly leads to nothing tangible. We ask to go home as more has been ruled out than in at this point. We have some telehealth appointments coming next week with Mayo in Jacksonville FL (Where she had her brain surgery 3 years ago.) Brain surgery is not currently being planned, but her uncle Ben (who works for Mayo) and neurosurgeon have been amazing at adding in the specialists we’re struggling to access here.
I know we will get there. I’m reminding our family that getting Tate a solid team that validated and then worked to figure out her body took time and wasn’t easy either. We’ll get there but are already heading into this depleted. Keira isn’t well. Something is being missed. I promised her we’re not giving up. We’ll get her back on her feet again. Thank you for praying for her and Tate and for our family.