9/8/18 BMT Day +129 I Wish You More

A few days ago, I shared the news that Reese has added TMA to her list of transplant related problems. Since then, the doctors have been working to solve this new puzzle. The first order of business: to remove tacrolimus (an immunosuppressive drug used to lower the risk of organ rejection.) On the list of possible reasons Reese has TMA is tac, and it’s the first line of defense against TMA, to remove a possible culprit. Her tac has been swiftly weaned the past few days and the wean ends tonight. This, along with another steroid wean (to 1.2), both happened this week. So far, she is handling these very well. Jakafi, her newest drug, was added to replace tac and I’ve said that this needs to be absorbed by her gut. Jakafi levels can’t be checked. So, to test how well her gut is absorbing right now, we checked her vitamin D levels. This is also taken orally and needs to be absorbed. We weren’t thrilled with her vitamin D level (it was 17 and 20-40 is “normal”. Better than the 6 it was before she started taking it orally… but it should be higher.) I am holding my breath over the next few days, praying that all goes well. Only time will tell and while I don’t feel like time is my friend right now, someday that will change. Why not now?

“I wish you more pause than fast-forward.”
One of the books that Reese and I love to read together is I Wish You More. My mom gave it to me and now I read it to Reese. We have a couple books that are special like that and I love them the most. Anyway, Reese and I spent quite a bit of time on this one particular page last night. I tried to explain that we try so hard to “pause” the good times because we want them to last LONGER. The moments that are so good they seem to just fly by, and we are left grasping for them, wanting more. And then there are those fast-forward moments. Especially those that turn into hours and then days, weeks and then months. I would love to hit fast-forward on her pain, on the doubt, on the complications, on the disease, on the questions, on the lingering meds, on the fear, on the “toobies” she has to sleep tangled in night after night. I am constantly grasping for good moments in these days, and I’m not saying they aren’t here, they are. But I wish her more pause than fast-forward.

My other kids, Quinn and Claire, have been living at The Family House since the end of May. The Family House is basically a hotel room style “apartment” with shared living spaces like the TV room, the kitchen and the dining room. The Family House is for very sick little kids and the families of these kids. We are blessed to have this available to our family.

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