Friday, May 14, 2010

She Had One While I was Holding Her

Sorry, I feel like venting this morning. AS USUAL, I have to go to work even though my world is shaken up and I am wondering what is going on. Why should this time be any different - I had to do that when we received the diagnosis of DS and when we received the diagnosis of IS. Now we are probably going to find out she is having another type of seizure. I am almost certain. I feel it in my heart. I also doubt we will get answers today, but will instead be tormented with this for a week at least. Then the "fun" part comes in and you get to watch these episodes and know that they aren't right and that right now there is absolutely nothing you can do about them. It is so painful and you feel so ineffective as a parent.

Why did these possible seizures have to start on all days, Mother's Day? I just don't get why when our world finally settles down something once again flares up. First my job situation flares up, then I get feeling a little better, and now this. I am in a why-why-why phase, sorry. I could also ask myself why I neglect my blog and then something crappy happens and I just come out of hiding. Oh well. I am a slacker.

Last night Quinn had what I believe and am almost certain must be a seizure while I was holding her. She turned her head. Her eye went strange. She was very tense. I said her name and she wasn't fully there. It is hard to describe, but I just felt like I knew it had to be another seizure. The whole thing was not right. I had this pain in my heart. This was the first time I was up close and personal with it. Otherwise the ones I have witnessed have been when she is playing or moving around.

I am sadly learning that the brain is everything. I was so foolish to worry about the heart, stomach, all these other areas. I can't believe that I neglected to think about the brain.

Please keep Quinn in your thoughts and prayers, hoping we get an answer and she can get some treatment soon.



  1. Oh, Karyn, I can't imagine how frightening and frustrating this is for you. You'll be in our thoughts, as always.'s your blog! You use it how you want to...even if it is just as an outlet for when the tough times just get to be a little too tough! :) (Though we do miss ya when you're gone!)

  2. I sincerely hope that you find some answers soon. I know that IS often morph into other type of seizures. Yusef still has IS and also started having head drops or atonic seizure.
    I so understand the torture and just sickness you feel in the pit of your stomach.It's been one thing after another in our family and the health of our children as well. My husband and I have made a pact that we will never say "it could be so much worse" because when we do it often does get worse. We just try to stay grateful and count our blessings and take it one day at a time.
    Hugs to you and your sweet Quinn...

  3. We will keep Quinn in our thoughts and prayers and hope for a speedy diagnosis and resolution! As Courtney said, this is your blog and use it however you want/need to! We all understand!

  4. Karyn, This is Joyce. I know litte about seizures, actually mostly what you and blogzilly have posted, so I am no help from an informational stand point. But I surely can imagine how frightening this is for you. I sure will be praying for you and Quinn. I hope the appointment will bring some answers at least.