So I know I haven't posted in quite a while and I've got good reason, as we all do....LIFE.
I posted that they were considering Kelly to have Donnai Barrow Syndrome...well while looking at that,
genetics was able to confirm she does have Rett's Syndrome and probably has a second syndrome, maybe Donnai or another that they might not be able to confirm.
Having a diagnosis is good in that it can make sure we are following up on areas of Kelly's health that could become a concern in the future that may not be causing her a problem now, like heart arithymias (sp), seizures and scoliosis.
The flip side of the coin is all that could go wrong and not knowing, all that other children and women are going through and visualizing these things happening to Kelly. It's easy for others to say, you can't compare or don't worry yet....please....
you can't help but worry and its only human to compare.
Its new years eve and while others are celebrating the possibilities, I'm terrified of them. Of course, this diagnosis is new to us and we are still trying to deal with it and how we are to live our lives and raise our other daughter Sabrina...Sorry for the grim
or some what negative posting. I needed to vent a little.
So raise a glass, have some fun and ...when you have a moment....say a little prayer for our angel...Kelly...
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3 comments:
My name is Kelly and my daughter Brooklyn was diagnosed this May with Rett Syndrome one week after her second birthday. You have EVERY right to be mad, scared, sad, and ALL other emotions that will come and go over the next months. It sucks....we had BIG dreams for our little girls, dreams that have been stolen from us. As their mommies it is our job to be strong and dream new dreams for our little girls. That is NOT easy. There are days I just do not want to be strong anymore and that is ok, those days will happen! I have found strength in other moms. We are the only people who understand the hurt as well as the small joys each day as we watch our grils grow and blossom into their own. Hang in there....life is going to be different than we planned but we'll make it. Feel free tl check out my daughters blog www.brooklynbutler.blogspot.com or email me if you need to chat kellyandcharlie@yahoo.com
Kelly, mom to Brooklyn
Kelly is always in my prayers. So are you.
ALL of your family is, and will always be, a part of our prayers.
Sandi and Will
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