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Randi Zaila
21 followers
21 followers
About
Randi's posts

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Becoming aware
I prefer to do positive style posts because that is how it's best for me to deal with all things CDKL5.  The past week and a half I have spent each morning deciding which fact I would be sharing about life with CDKL5.  My goal is always trying to balance sh...

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Pause
In approximately 12 days we leave the oven we call Phoenix and head east for the summer.  I am pretty sure the timing couldn't be any better as I am beyond ready for a break.  It is different than needing a Starbucks run or getting a manicure or pedicure.  ...

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Never ending with GI....
If you
have been following Sonzee’s journey for a while now then you are probably
aware that her biggest battle has always been her gastrointestinal system.  Since she was six months old she has battled
with gaining weight and from trying to solve that issu...

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Missed out moments
For those of you who I know personally and were able to view Sonzee's (as of 8 hours and 59 minutes ago) now four year old sister slather lotion all over herself and her bedroom, I hope it provided you a decent bedtime laugh.  For those of you who were unab...

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Keeping the faith....
Lately I have been really struggling with the whole concept of
having faith.  It is hard for me to keep hope and be optimistic when I
feel surrounded by not only Sonzee, but other little children trying to battle incurable
disorders and diseases.  I realize...

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The evolving role of Mother's Day
From the time I was a little girl I have wanted to be a mom.  I couldn't wait to grow up, get married, and have a baby of my own.  When Sam and I first got married I (naively) thought that it would happen just as I had dreamt.  The first 9 months of our mar...

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it will be...
I feel like there used to be a time when I could undoubtedly say
to someone "things will be fine".  I do not remember second
guessing the words or ever really giving it an extra thought of whether the
outcome would actually be "fine", because of course it w...

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No longer a baby...
We got up and went to the airport yesterday like we have done many times with Sonzee in tow.  We even managed to get there early (yes, even we are capable of doing that on occasion- we just try not to make a habit of it).  We got through security in our usu...
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