Day 15- Blood, sweat and tears

First the blood.

Today was Katelin’s first checkup since we left inpatient status. I didn’t think the things I was seeing were all that drastic, but the research team seemed super pleased and enjoyed watching her videos, esp. the one of the circle. Ok, I myself watch that over and over, so I can’t fault them for wanting to see it several times. There were two blood draws today, Katelin was so brave, but I personally, though I know it’s a true necessity, can no longer watch if they don’t get it on the first stick. I’m tired of seeing her poked, she has bruises all over her hands and antecubitals. She cries a bit now just getting the alcohol rubbed on her. My brave, poor girl. 😦

Now the sweat.

imageI rarely sweat the small stuff, but Katelin doesn’t sweat, or  very, very rarely. I can’t recall her ever sweating.  A lot of Rett girls don’t. Sweat is so important and Katelin easily overheats, unable to regulate her body temperature in high temperatures. Nope, no sweating. That is until yesterday, when Thuy, the PA on the research team noticed Katelin’s palms were sweating. You could’ve heard a pin drop, I’m certain my jaw made a sound when it dropped nearly to the floor. The meaningfulness of her sweating cannot be trivialized. If this is caused by the NNZ-then it represents a potential tremendous improvement in the quality of life of Rett children and adults. Just think about it! No more worrying that if you    go on a picnic there has to absolutely be shade. No more worrying if they stay outside on a field trip that they will get sick from heat. No more worrying that if they are able to play  you’ll have to stop them way before you want to because they started to scream from suffering from the heat. And maybe, just maybe if they can sweat, then their circulation  might be able to improve so their hands and feet warm up, while the rest of them cools down. This, to me, is the most medically significant thing that has happened for Katelin.  And when I took her on the swings, she  swung for over an hour and never got red in the face and her forehead WAS sweaty and she was cool.

And we end with tears.

Katelin poured Gatorade into a cup. This should never have been possible. The amount of focus and control of her body that that took makes it a miracle. And she knew it was a miracle, and she laughed with joy, while I cried with  joy. And we made a comedic pair as she poured from the soda bottle and I refilled it from the cup over and over, laughing and crying like fools.

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

5 Responses to Day 15- Blood, sweat and tears

  1. Buddy says:

    So Katie be chillin while she pours a cool one 🙂

  2. Cheryl says:

    I am enjoying your daily blogs so much. I am so happy that you are able to participate in the trial. Today sounds like a miracle!

    • melelllan says:

      Cheryl, thank you 🙂 so many people love and care for Katelin; I wanted people to share our journey. Without the love and support of all kinds we would not have made it here, and that’s a fact.

  3. Linda E. Williams says:

    I cry inside at the suffering she is enduring, while smiling at her CONTENT facial expression. OMG! Sweat on! Love and hugs, Linda

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