5/27/18 BMT Day +23, +24, +25 Look to the sky

Reese has been making progress across the board! Her CBC counts are on the rise (neutrophils 2,100!) and her VOD counts continue on a steady decline. Today, all but one of her VOD counts is in normal range, this is incredible! She made a swift recovery from a dangerous situation and we are relieved to put VOD behind us. So far we feel extremely lucky to say there is no sign of GVHD. This can pop up at anytime, but each day that passes without any inkling is a good thing. We had a great donor, and this is a big plus when it comes to GVHD (the compatibility.)
We had a concerning problem this week when I noticed that Reese had tremors and her speech was slow. Her thoughts were on, she is sharp as ever, it was her delivery that was consistently slow-paced. This was a puzzle. Neurology came to look at her twice and her doctors changed up some of her meds. It was another scary time, there are so many what-ifs and possible side effects. I was worried. I am happy to report that the problem is solved. The doctors figured out it was from certain medicines and one was removed and a couple others weaned… as soon as the right combo was found, her symptoms began to improve. Thank god.
Anyone who knows me that I don’t like to miss a thing. Especially when it comes to my children. I have always wanted to be fully present, seeing every move, relishing in their little personalities and celebrating every step. I have a innate drive to see everything and I want these tiny little girls away from me as little as possible. I struggled to leave when they were in the young 2s program, coming to pick-up early with Claire, just to watch them on the playground for a couple special minutes. When I found out I couldn’t walk them to their classrooms this past year for 3s I was devastated. I mourned this for a couple weeks before I accepted the drop-off-line. (I remember my friend Kerry telling me that if you aren’t there on time, you “HAVE” to walk them in. Ah hah, I thought, we will just be late! -I didn’t actually do this, btw. Well, at least not on purpose ; ) After school, I love to see them walking down the stairs holding hands (as they always do) it makes me so proud. One of my favorite moments is when Claire and I stand at the bottom of the steps, her screaming in excitement when she sees her big sisters coming, and then having my pack together for lunch and the afternoon’s adventures. “Mommy & Me” is my place, and whether it be taking my three to Friday morning gymnastics or toddler music classes- I am in heaven and soaking up every minute of it. I always wanted to use my teacher skills with my own children, a genuine dream come true for me, and I had it. My dream. I tell this because it has been a huge growing experience for me to accept that I can’t have this, right now. I haven’t seen Claire in 43 days and Quinn in 34. This physically hurts. I do it willingly, with the greatest love I have ever felt, for Reese. My girls have continued to flourish, growing stronger by the day. We have all been tested this past 43 days, and I believe that we are all coming out stronger than when we went in. I spoke of my concern for my lack of presence to Chris one day. His response- You are your mom. And your mom is with your children. It’s the best it can be.
The best it can be, that is the goal. How exceptionally blessed are we, to have the best it can be. And I have the best village.
Now for the happy ending, I wouldn’t end on a sad note. MY FAMILY LANDED IN SAN FRANCISCO this morning! Reese and I watched from the hospital windows, looking for planes in the sky, imagining we found the one that our family is on. (pic below.) They will go into isolation at the family house for 24 hours and then my family will be together again in the morning! Quinn will be at her sister’s side, where she belongs, and Reese will grow stronger for having her soulmate present. This reunion will be unlike any other. And it’s hours away! PHEW.

Reese looks to the sky, hoping to find the plane flying her family to SF!

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