Day 37 Christmas Day

Day 37

Today was a good day! Katelin recovered during the night and had as of 7:40 pm had a great day. She didn’t eat much breakfast or lunch, but DID do great with her supper, I’m happy to say. Santa was very kind to Katie and her favorite is the baby.

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There was tons to eat! Thank you to all who took time from their families to help the ones here, at the Ronald McDonald House.

And as this day draws to a close, I remain grateful for the gifts of all sorts that I have received. But, I am reminded, as I watch my child’s skills fade again, how hard it is sometimes to feel that way. There are days I am deeply saddened by loss, and the holidays seem to bring the sadness to the surface.

Self feeding skills back to pre-NNZ trial

There are people I miss-my other children and grandchildren and some like Scott, Alice, and Hazel who left us this year and others that I have loved that I will ne’er see again. And then a small miracle, like Katelin learning a new skill without any way of being influenced by the NNZ helps to soften the melancholy I was feeling.

Making the baby’s mouth move with her finger instead of the pacifier.

A small gift of great chocolate with VANILLA, no less, also helped. Chocolate really does help most things. IMG_4291[1]

And I re-read all the emails that Katelin received full of good wishes. We asked Santa for a cure this year and I believe in the magic of Santa, so I am certain that soon, very soon, our children’s suffering will be lessened and the new children who are diagnosed will one day lead a normal life, without suffering the effects of their disorder. And THAT will be the greatest gift of all. Merry Christmas to all and a special thank you and Merry Christmas to all the people who donated so that Katelin could have this incredible opportunity.

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This entry was posted in Rett Syndrome, Trail to a Texas Trial, Uncategorized. Bookmark the permalink.

2 Responses to Day 37 Christmas Day

  1. Cheryl says:

    Thank you for sharing your wonderful and inspiring journey with us. Merry Christmas to you and Katie and many blessings for the New Year.

  2. Rose & Renee says:

    Renee did the same thing when she got a baby with a pacifier. Katie, you and Renee have that much in common, for sure. You’re slick.
    Tell Mommy I said I hope she’s feeling good and I hope you and Mommy enjoyed your Christmas.

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