Post BMT day 297
+297
So much to get organized this week and we are almost all set with the plans. We learned that we will have to stay in Florida through January 30th to get stitches removed and give Keira’s brain enough time to tolerate flying. We’ve been away from home so much already this past year, being gone another month isn’t very appealing. But we are grateful that most of the logistics are falling into place.
Medically, An appointment for Keira still shows significant concussion symptoms. She continues to sleep a lot. Headaches are controlled as long as she takes it easy. Eyes are still showing nystagmus.
Tate remains about the same. She manages the pain as best she can during the day, but nights are miserable. The bone pain now includes her arms and hands and feet. The bone pain used to just be at night, but now is also during the day. The joint pain is also there but compared to the bone pain, Tate doesn’t complain too much about the joints.
We saw rheumatology today. Tates rheumatologist is wonderful with us. An hour and a half appointment to talk through all the things and the clinic side of the hospital was shut down by the time we left. The timing of us leaving for a month is tough. There’s lots they’d like to do to get to the bottom of the increasing swelling and pain. We may try a new medication to reduce inflammation once it’s cleared with bmt. That’s about all we can do from FL. More steroids will get in the way of marrow testing once we’re back. They’d like a full body mri and pet and to potentially do some infusions, another echocardiogram to check heart function and aspiration to test joint fluid. There’s concern about her marrow too but further testing will need to wait until February. It feels terrible to have Tate wait another month for answers and relief, but there isn’t much choice. We just pray God will walk her through it and give her physical and mental strength to deal with the increasing pain.
I’ve never dreaded something as much as this trip, except maybe BMT. Trying so hard to focus on the parameters such as the beach and the ocean, but this is definitely not feeling like a Vacation. I’m so grateful for the private messages and gift cards. We are just amazed at God’s pre-planning. I felt guilty with the generosity that came with the pancake fundraiser. I now see Gods plan in it as it’s helping us to pay for lodging and flights and food and incidentals while in FL too. Thank you from the bottom of our hearts for your love, prayers and support.