Finding Joy Again by Drinking More Fluids

The Hummingbirds love this vine in front of our house.

I have so much joy in my heart this week.  I have not had a seizure for nine days and I feel great!!  I have had many good things happen too.  I feel so excited to share them with you but most of all I wanted to let you know what we have been doing different that has helped me feel better.  

I have been working with a dietician for the past year.  We have made many changes to my diet but the biggest change is I started to drink more fluid everyday.  She thought I was probably dehydrated because of my hyperventilation and drooling that I can’t control.  I lose so much saliva everyday from drooling and lots of hyperventilation keeps my lungs from holding onto moisture. That’s what she said to my Mom, so she wanted us to start having me drink lots more everyday and to start increasing my electrolytes.  Here’s what I am taking.  (Crayhon Research-Peltier Sport Water-4 Tablespoons Daily in water/juice) We were nervous when she said to increase my fluids to at least 100 ounces each day because I have a really hard time drinking.  Especially anytime after noon.  I was determined to try it and my caregivers have really helped me keep up my drinking.  I need assistance to drink but I feel so much better in my head and in my body.  I usually drank about 70 ounces each day but now we try at least 100 ounces.  I stopped seizuring after the third day and I haven’t had any feelings like I’m going to have more.  She said dehydration can cause seizures.  I know many girls with Rett struggle to drink.  I do too, but if I drink regular throughout the day, it’s easier for me to swallow.  If I stop for a long time I have a hard time starting again, so we drink about every few minutes.  I hope this helps someone else today.

I am so happy about next week.  My sister Leah is coming home and we are going to Duluth!!  Just my Mom, Leah and Amy.  I can hardly wait.  We will be in a cabin right on lake Superior.  It’s so fun to do that with everyone.  I feel so much better near water.   I know I will be writing while I am there.  I hope I have some poems that come to me.  

My nephew was with us yesterday.  He is 21 months old and he LOVED playing in Beau’s water bucket and trying to sit on Beau’s back.  

Connor found Beau's water bucket in the barn.

...and climbed in

We had fun watching him

Beau has never had anyone sit on him. We are all too big!

I played my favorite game with my step-sister Sara. Connect 4

Love, Karly

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3 Responses so far »

  1. 1

    Siskiwitmama said,

    Wow, it is amazing to me how just 30 ounces of water has dramatically changed your body’s functions and reactions. You must be feeling great to be seizure free for that long! Excellent information to share with other girls. You are amazing Karly. I will repost this on my blog, as I get some visitors looking for information about RET Syndrome.

  2. 2

    Jen said,

    Hi Karly

    Thank you for posting this. My 5 year old daughter Emma struggles with drinking and what you wrote makes so much sense. Part of me wondered at times if this is a way she could control something in her life, but then I could see that it was really hard at times for her to do it.. I am going to do for Em what you are doing!

    Do you have a preference for the temperature of what you are drinking ? I am starting to think very cold things help Em swallow better but I could be really wrong and making things worse…

    Again… Thank you for posting this and for helping us maybe understand a little better.

    Hugs
    Jen
    Mom to Em. 5 rtt

    • 3

      spiritdances said,

      Hi Jen
      I am feeling better today but I didn’t sleep last night so I’m tired. But when I read what you wrote about helping your daughter drink, I wanted to tell you that I feel so much better when I drink more. Somedays I drink 130 ounces but I also take electrolytes. So far, it’s been a month and I feel much better. What I wanted to say though, is that if I drink more, I have less trouble swallowing. If I stop drinking even for an hour, it’s hard for me to start up again. It seems like my throat stops wanting to swallow. For me, I need my drinks near the temperature of the room. I can’t swallow really cold drinks. It hurts my throat and my stomach.
      Karly


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