Hold the Plane…Gav’s Transplant Set for September 27th in Madison, Wisconsin!!!!

Hold the plane, the itinerary has changed! We have a date, da da da da———-September 27th, and we are staying right here in Madison! We have somewhat tweaked the steroid free protocol and are doing what our surgeon compared to “a Lexus” type treatment. Best proven outcomes with the lowest risks! We are so happy to be doing it here with a team that we know, respect and trust.

Gav is starting to get quite interested in talking and has proven that he knows his facial features. I also asked him to get me a diaper and he brought it back with such pride, now if I could only teach him how to change it. I actually thought about teaching him to help me take it off, but then realized that I would be chasing after a naked bottomed baby for a good majority of my day and passed on that thought! He is starting to eat again, little bits and pieces and is obsessed with walking.

Lulu is desperately awaiting her fourth birthday party. She actually told me that she is “giving up” on her birthday since “it is never coming anyway.” We shopped for her plates and cups on Monday, so I am sure that Sunday seems like an eternity to wait for the actual party. She has decided that she wants pretty much anything ever made in the toy departments of Kohls, Target and/or anywhere that houses toys and whenever we go anywhere, she asks me to add things to “her birthday list”. Never mind the torrential down pours that we have been having, we won’t need a water slide for this luau, we’ll just give kids a raft and they can paddle through the yards!

Kid rules are starting at the Winslow house. You know, the super long ones that don’t make any sense to adults, just other kids. Gav had a toy and Lulu swooped in like an eagle spotting her prey and took it away. I told her she had to give it back, he had it first. She then informed me “no, I had this toy yesterday.” It just made me laugh because it brought up all the rules that kids make on their own between siblings. Like the TV remote – when I was little, it was the most cherished possession on the planet. It had to be like on your left knee facing where the sun sets turned upside down and you had to be sitting cross legged, otherwise it could be taken away and your precious cartoon changed (and thanks to my mom, only two shows a day between five kids were never agreed upon, parents, ugh). Come to think of it, I think that my older brother and sister made up new rules each time one of us younger on the totem pole had it….they always had control of the channels, hm mm, interesting revelation (I’m onto you Mike and Cary!)

Well, we are very excited at this point to have the finish line in sight, lots to get accomplished prior to, but we will start that next week! It finally feels real! Hopefully this goes smoothly. Yesterday I was thinking about how different our life will be. We will be able to do things, not worry about time or ten hour machine treatments, not scrubbing in, no blood pressures twice a day, pools, camping, vacation, it’s going to be like getting freedom back. We are so lucky, thank you thank you thank you God, may You continue to watch over us!

Jill

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2 thoughts on “Hold the Plane…Gav’s Transplant Set for September 27th in Madison, Wisconsin!!!!

  1. Jill and Jay,

    Wow, Sept. 27th. That is exciting!!!! I hope nothing but the best for all of you, and in Madison too. Now your family can be close by too.
    So Lauren can’t wait for her birthday. You know it has been a whole year since her last one. No wonder she doesn’t believe that it is ever going to come. I’m surprised she just didn’t have a birthday tea since you already have her plates and cups.

    Love
    Nancy

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