Sunday, May 06, 2007

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Well as some may no from my last post we are in the process of getting rid of the Ketogenic Diet and we are HAPPY to say everything has gone great! Cameran still remains seizure free here at another 4 week mark! I am trying so hard to stay on the Positive side but I cant help but wonder if these things will ever peek back in on us! I am patiently waiting for the 4.5 week mark, some of you have been following Camerans site for a while now know that a little over a year ago we made it 4.5 weeks with no seizures only for them to return again! I am so praying that it will not happen again.

Why is it that during these seizure free times a mother is still living in fear of what tomorrow may hold? This should be a joyus occasion and although I am extatic about her moving forward I just cant help but wonder what if! What if we had tried this med sooner, what if we would have never done the worst medicine ever ACTH...I just feel like so much time has been wasted. It took almost 2 years for her to be rid of those seizures! But why? So many questions for such a rare diagnosis!

I guess the nerves will settle in time! And speaking of time man has Cameran ever put her development in to high gear in just 4 weeks time! This girl is ready and willing to learn! Still no babbling or talking but her signing has greatly improved! I dont know if my baby girl will ever talk but just watching her sign to me is such a moving moment. Sometimes she just taps her legs, touches her toes, waves her arms in the air for my attention but the point is, she IS trying to get my attention!

Last week during a Therapy visit her teacher had her shaking her head yes when we asked her if she wanted more bite! It was so great to see her do something new. I just wish these next few months would fly by so we can get her off another med and see how quick she picks up things then! I'm sure it's hard to think being so heavily medicated. But what a trooper this girl is I'm so proud of her of giving it her all when she is so wiped out! You're a BRAVE little girl Cami and we hope and pray that all your Wishes and Dreams come true!

She goes to see the Neurologist this Friday and it will begin with another EEG to see what progress she has made! I CAN NOT WAIT!!!!!!

Her new thing is cutting those BIG ol' brown eyes at you! Its hilarious...

Oh Cameran Cameran, What are we to do with you? She really knows how to make the Therapist work. It takes 2 of us to hold her still while she gets strapped into this thing, only for her to wiggle her way out of it! She is fast! Not to mention that she will not hold onto the handle bars like she is suppose to do. And dont even think about trying to hold her hands on there because she will SCREAM! She does NOT like her hands to be held!!!!

1 comment:

JSmith5780 said...

I am so gald things are still going well!

You never truly stop worrying, it just gets a little less. Since we think Austin had one in Jan and one in March, I am expecting one this month. But when is the question.

We see the neuro also on Friday. I am seriously considering firing her. One, she changed his diagnosis without telling us and two she never calls back. I left an URGENT message two weeks ago and heard NOTHING!

Grrr...hope your neuro visit goes well.
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