1 Year + 149
1 Year +149
TS pics still to come.….Tate is reveling in the aftermath. Bracelets were handed out to nurses and staff this week, videos shared on repeat and endless TS playlists filled our room. An incredibly memorable and amazingly fun experience for both girls. I continue to just feel so so grateful for the love and opportunity. Sometimes something that seems relatively simple is the boost that keeps you going.
7 hour IVIG infusions both Monday and Tuesday. These used to be 9 hours each. 7 seems to be the fastest we can go, but those two hours make a difference in feeling like you have a little day left. Tate has been saving these mini verse resin food kits to do one each ivig. They’re so cute and we “cure” them in the window.
Another week lost waiting on the further pathology from the biopsy. I was told this last week that the extensive delay isn’t “necessarily ominous.” Praying for that, but ready for anything.
Tates knee block was unsuccessful. It left her with a numb section on her shin but no pain relief. We are so sad for this. Tate’s pain is so significant. This wouldn’t have fixed even close to all of it, but would’ve made it a bit more manageable so she could walk better and more. She is headed to medical camp for bone marrow transplant kiddos this next week. Last summer, I took her to a weekend family camp at the same place. Her dream for the next summer was to be able to run. Last summer she was in less pain and walking better than now. But she’s not giving up. And I won’t stop searching and advocating for new ideas and treatments for her.
Keira had a day yesterday that woke her again with an extreme migraine and vomiting. We now have the right arsenal to keep her home and still put her in the car for an 8 hour drive. She slept and we made it. At times, there’s a desperation for relief. We need a new path forward.
In between the medical, Tate is getting to soak in cousin time and me time with my all my bonus sisters, brothers and mom. Tim is marrying a niece on his side. Family is so precious.