3/15/19 Flamingos

Reese spent the morning with the flamingos at the zoo yesterday! It was a special moment and it was well photographed. She chatted with the flamingos (do you know what sound a flamingo makes? Reese does.) My heart leapt for joy when she took Quinn’s hand and “ran” off, just as she used to. Just as she should. She brought home one flamingo feather, which is safe in her flamingo purse, that her nurse Lexii gave her. It was a wonderful reentry into the world.

This has been a BIG week for the elimination of MEDS! We love to see them go, and I get so much satisfaction from deleting them from my spreadsheets. Three of Reese’s daily meds were eliminated this week: magnesium, potassium, and Levoflaxacin. Her electrolytes have stabilized (finally) and she is holding her own mag & potassium, so we no longer need to supplement these. Today I learned that we can also peel off one of her antibiotics, Levofloxacin. She has been on this for months, ever since her TMA (thrombotic microangiopathy) diagnosis. To treat Reese’s TMA, she was given eculizumab. Eculizumab inhibits the complement system (part of the immune system.) The complement system helps to fight against really nasty viruses. So, while Reese was being treated with eculizumab, and this facet of her immune system was taken down, she needed this brutal antibiotic to help keep her safe. Not any more (cue cheering!) I hope this is the last time you will ever see me write about TMA, what an incredible blessing that will be!!

A lot is happening on the yellow house front. Today I packed the majority of our household. We have been here almost a year and we have accumulated… a years worth of stuff. This is disproportionately toys, and they will be traveling across the country packed into the Black Stallion (minivan) which will be on a giant auto transport trailer. We reached our max weight. I hear it is snowing between here and there, so hopefully my precious cargo of unicorns, musical instruments, Legos, and of course flamingos make it safely across the 2,138 miles. The conundrum of how to get Reese’s medical supplies safely to Winnetka has come up a lot. Because there is A LOT of stuff. While our family unit will be flying with 14 suitcases, 7 carry-ons, and 7 “personal items”, there simply isn’t space for everything, so we have been looking at a variety of options. Temperature variations for five days dissuaded me from packing them into my car for the trip and I want them ready to go when we get there. My good friend Terri offered to fly out here with two empty suitcases, pack them with Reese’s medical supplies (and shoes. The girl has a lot of shoes.) Then she is flying home the next day and handing them off to my friend Ginny who will organize them at the yellow house for Reese’s arrival (the medical supplies, not the shoes.) Yes, you are correct, I have the best team. Gestures of kindness and thoughtfulness like this are happening all around me, God blessed me with a community of givers. A great friend is organizing the final details on my house with other friends as helpers. I have three friends who are graciously picking up our caravan at O’hare and bringing us to Winnetka, where we will meet the trolley to begin the final leg of the ride home. I’m going to ask these friends to join my family for the whole ride back, SF style in the trolley!

On the topic of my community, something very special is being planned by my friend Mary-Audrey. A BYOB celebration, Bring Your Own Balloons!! Friends, neighbors, family, are going to line our street with balloons to welcome my sweet girls home next Thursday, March 21! My children do not know, this is a surprise, and it is going to be a magical moment. Our trolley will turn onto Willow Road in Winnetka around 1:45/2:00pm. It is at this time that the parade of balloons will be meeting, on Willow Rd between Sheridan and Poplar. If you would like to come, we would love to see you and this incredible sight as we head toward our dream come true. A dream months in the making, walking through our doors together, as a family. (I will update here and on FB when our plane takes off on-time!!)

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