February 27, 2024
1 Year +361
The last handful of days have been hard to place a description on. There’s been some really good things. Tate absolutely rocked PT today. She talked nonstop through it, which is her distraction method, but it was so fun to see her power through. Abbey spent the next hour working on me and Tate promptly fell asleep, having given everything she had. We’ve noticed during the last couple sessions of PT swelling again to go along with some other rheum symptoms.
Tate is scheduled for two days of IVIG next week. There’s mixed emotions in that. But also gratitude that it’s available to us.
We had big plans to meet up with Grama Sandy today at the airport during a long airport layover. However, a simple dental cleaning turned into x Ray after X-ray with bonus add ons that come from disease and medication side effects and lots of subsequent discussion and planning for further procedures. We were too late to catch Grams. ( Healing prayers for her as she shattered her knee cap during a fall last week)
This week the tissue cultures were sent off for the whole genome sequencing and Tim and I sent in our cheek swabs to go along. I also was able to finalize all the paperwork for the referral by Tate’s Dr’s for the National Undiagnosed Disease Network. We don’t know if Tate will be accepted into this program. It’ll likely take around 8 weeks before we hear. And then many months before there’s any movement at all if she is. Tomorrow I meet virtually with a rare genetics Dr from Mayo at Rochester, MN.
There’s something to being on this side of the IT pump surgery. There’s gratitude for what it provides. There’s sadness too for what’s left and what we see still progressing. We feel actually like where we sat maybe 3 years ago. Or rather, Tate “feels” this way. The pain is a bit quieter due to the pump. But so much else is still loud and clear. We’ve felt really loved this week through meals and gifts of PT and just gifts and messages and more. The love and encouragement has been so timely. Thank you from the bottom of our hearts.