Ramblings of an Impatiently Waiting Parent

10 am

I woke up at 830 after waking up at 1230 and staying that way until 5. I made coffee and toast, completely normal things… Who the hell am I kidding??? I literally thought “this is the last time I’ll make coffee without knowing.”

1130 am

Ya know that saying…a watched pot never boils? Well, a watched phone doesn’t give out results, either. I welcome other parents to post their own ramblings over the day, as we all wait this day out πŸ™‚


I think it’s cool, on Veteran’s Day, to acknowledge the Army for its involvement in the research and development of NNZ-2566-



Oh, having just read through all of that, I realize this day has actually been 10 years in the making. Thank you Neuren for working half my child’s life to help her.


I wonder if I keep shaking my foot if it will fall off?

image445 pm

I know nothing about champagne, so I hope this was a good choice….
Two things
1. I told the cashier it was for a monumental occasion I’ve been waiting for, for 19 years…she goes…divorce? Bwahaha
2. I will drink it one of two ways, kinda like Paul Revere and his two lanterns…good news a glass and toast will be involved; bad news- I’m drinking it straight out of the bottle.

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8 Responses to Ramblings of an Impatiently Waiting Parent

  1. emilyjosmom says:

    Interrupted sleep, awake on & off all night… And Emily only woke me up twice!

  2. melelllan says:

    I doubt many of us got much sleep at all! πŸ™‚

    • Mal Wilson, Australia says:


      The Neuren headline says it all

      Neuren successful in Rett syndrome Phase 2 trial

      Hope the champagne and the glass are both chilled.

      Our thoughts are with you.

      • melelllan says:

        Mal, thank you so much! And thanks for the tip. I never can afford it, so I didn’t know to chill the glass πŸ™‚
        I hope ALL of you know how deeply indebted I am to you, and when she’s able I will have Katie tape a “thank you”. I know you can understand how that be “when” and no longer an “if” or “never”. It seems like so little, but Thank you from the bottom of my heart.

    • melelllan says:

      Thank you Frogga πŸ™‚
      The kindness of so many wanting me to be out if my misery from waiting is humbling. I have often told my friend Akex, who lives in Australia, I would never visit because if the three S’s (sharks, snakes, spiders) but now I would give anything to be there to hug all of you. And I am certain this is something you all have been waiting for and I hope you all make a bundle!

  3. Terzita & Frank from Sydney Australia says:

    Mel, we both have tears of joy for you and Katie and all the rett families xx enjoy the champagne xx

    • melelllan says:

      I have tears of joy, too, but some of those are of gratitude. I greatly appreciate knowing so many people have been touched by my girl and she and I in return. Many blessings to all of you. It’s to you all I will be raising my glass.

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