Enter the Mummy

Week of September 4th, 2019: Cee has lost 30 pounds since she got out of the hospital, all of it fluid basically in her right leg. It’s half the size it was a week ago. So amazing!

We started wrapping the other leg, so she’s a mummy on both of her lower legs. Her legs are painful, but the leg that has been wrapped for a week isn’t as tender. Her body is adjusting well.

Note: Photo on the right was taken on September 6, 2019.

We spent time talking about going camping again. We used to hike and camp year round when we lived in Colorado. We both miss that. Over the years, Cee has become increasingly immobile as her legs have gotten bigger and bigger. We’ve had to give up a lot, but now we’re starting to see some sunshine. We have some hope.

Her pants are getting baggy as she loses volume in her legs. That amuses her.

Jackie added some exercises, basic calisthenics. Nothing complicated. Cee is going to have to learn where her balance is. The size of her legs has kept her from having them under her, and it’s distorted how she has moved. Now that her legs are getting smaller, she can start moving them closer together. It makes a big difference in how she moves.

She is sleeping and napping a lot as her body continues to adapt. We’re just taking it a day at a time. Every day seems to bring new insight and a little more hope.

19 comments

  1. I’m so excited that you have found a doctor who diagnosed you and understands the disease. As a fellow traveler in the unfortunate realm of “I have no idea what you have or why you are so sick, so………. I can’t help you,” I understand the gradual loss of hope. The light finally breaks when you find someone who says, “I know exactly what you have and this is how we’re going to set up treatment.” Although my disease is different, Cee, I can also say that I went through many bleak years. Hope started to break through a couple of years after treatment started, and I started to improve. I can now do so many things that I thought I had lost permanently! I’m sure you will get to that place too.

    My love and best wishes, Cee.
    💕Hannah

    Like

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