Post Transplant Day 348
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Tonight is daddy daughter date night. So special that both these girls are here to be loved on by their dad. It’s incredible to think how fragile life can be. We are truly grateful for all the moments as our perspective on what we value most continues to be refined.
We are still waiting for Keira’s latest CT results to make their way to FL and back again. But we fully expect an all clear as Keira continues to heal and work towards her new baseline.
Tate has had some tough pain days that flow into longer nights. We are in communication with her rheumatology team and they are working to coordinate both a needle aspiration of the fluid in her joints and a full body mri hopefully when she is already asleep for her spinal tap and GJ exchange. Both to assess the level of inflammation to get a better idea of how to move forward in treating this pain. The 27th feels very far when pain is so consistent and at times severe. We are praying for patience and a solid direction for treatment.
Despite the pain, Tate continues to work with PT. Abbey is amazing and uses the tougher days to work on joint flexion and moving the fluid and Tates stronger days to work on strength. Tatum is getting stronger, developing more stamina and her GI issues continue to slowly improve. Tate is still very dependent on iv fluid support but is doing so well with eating. We are thankful! Tomorrow Tate has her first official day of OT. She’s been looking forward to this-OT can be fun! Her OT is named Meg and she and Tate have lots of fun ideas!