6/9/19 Running & Biweekly appointments

We have been home for 11 weeks. My goodness, children are resilient. Reese is somersaulting into 11 weeks. Literally. She asked Erin, her beloved neighbor/sitter/gymnastics coach to bring over her gymnastics mat so she could prove it. The first time she somersaulted (remember, Reese was in gymnastics right up to the moment of diagnosis) she shocked herself. We were up in her room and she just, did it. Afterward she froze. We were scared she had hurt herself. A whole minute went by as she sat stunned. Then she smiled, realized what she was again capable of, and did it over again. She is also running, new this week. Her tiny little legs carrying her across the pavement like a 5-year-old. Because that’s what she is, a young lady with the power to run. (This video is below. I should note that you will hear Quinn shouting, “Claire, take his money!” This was not a robbery in progress… rather a drag race in Winnetka. In little pink cars.)

I’ll add that Reese REALLY looks like Reese again. This petite little peanut with a huge grin. It’s pretty awesome.

When I think back to my time in the isolation unit, I remember a vision that I kept near, replaying over and over in my head, as I laid in bed next to Reese, gazing at the mountains and San Francisco skyline, from the BMT isolation unit. The vision was dinner. It sounds simple, I know. Well, if you know me well, you know how I cherish and value dinner. I didn’t create that value alone, it was passed down to me, by my parents. You see, growing up, we all sat down to dinner as a family. Every night. Not on the fly… a real meal, breaking bread as a family. There was not a television in sight, just conversation. So when I had my own children, I began this same ritual, from the time they could sit at a table in a highchair. My family sits down to a meal together, that I prepare (I draw so much energy and positive vibe from being able to do this) and we talk. Really talk. We have a really big kitchen table and it is the heart of my home. THIS is where it’s at for me. Now, my daydreams in San Francisco included my backyard. Meals at my outdoor table, followed by s’mores and lightning bugs. My kids running through our idyllic yard, giggles filling the evening. Well, the lightning bugs aren’t out yet, but my heart is full and my dreams came true.

I haven’t heard back from Reese’s donor. I promise to keep you updated on this if I hear anything.

Finally, Reese’s appointments were spaced to BIWEEKLY! This is huge, it’s because her IGG levels are holding strong enough to give IVIG every fourteen days. We are very excited. Along the same lines of success, her albumin is 3.5!!!! (Normal >3.2). Reese was receiving IVIG 3x a week for many months. We were so happy to space to 2x a week right before she was released from the hospital. Then we were ecstatic when it spaced to 1x a week right before we left the Family House to come home. Most bone marrow transplant kids need IVIG about once every 4-6 weeks, to put it into perspective. There are two reasons that Reese needs it more. For one, her protein losing enteropathy. For two, the doctors wiped out her B cells last fall to fight a virus. It takes many months for them to recover and make immunoglobulin G again. So she is losing it but also not making enough of it. But holding on for fourteen days is progress, we are headed in the right direction!!

I’ll end on a sweet note. I was alone in church with Claire, who just turned 3, on Grandparents Day. She was sitting very patiently and attentively. Finally, toward the end of mass, she asks, “When is God going to get here??”
My sweet Claire. If only you understood how close He is. You will.

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