I find myself living in fear that Jennah’s seizures will return. On January 9, 2010, God willing, she will be 9 months seizure-free. Yay!! But I have that constant fear, one that keeps the muscles in my neck taut and stressed, that she will start jerking in my arms. If that were to happen, it would mean that the seizures have overcome the daily dose of medication she is taking. She’s currently only taking 50 mg of Lamictal a day. Her drug curriculum is so easy now compared to when she was on 3 different medications simultaneously with administrations four times a day! If the seizures return, treatment would be difficult as the drugs left to try on the list were the ones more toxic. It feels like a dream and I’m afraid I’m going to wake up. It seems like it was just yesterday that she was seizing. I still remember how she felt and how we became almost numb to the thrashings of her mind and body.
She is only 2 years old, this I must remember time and time again. It’s been an incredibly long 2 years with so much accomplished and experienced. We’ve done so much time in the hospitals between NICU, 24-hr EEG surveillances, G-tube operation and all visits in between, not to mention those to come. I earned a “fast pass” and an ID lanyard at Seattle Children’s last summer to forgo the initial registration formalities. These are not things to be proud of.
I don’t know what the future holds for us, but I find myself trying to figure and plan it all out. I’m compulsively detailed-oriented, much to my determent. Everybody wants to know when we will return to the U.S. Even I want to know when we will return! I know I must return by January 2011, since that is when I need to complete my last two quarters, in person, to earn my Masters in Medical Engineering. But the year between now and then hold another “if” … Jennah’s hip dysplasia. So here it is … if we can wait to perform the tenotomy for her hips until December 2010, then we will. But if we can’t, then we may return to do it sooner. Then that brings up problems with Aziza and Bassil. Do we move them back to the States for a portion of the school year? Do we leave them here with their dad (I don’t think I’d survive this option!)? Would we leave Issam behind and move back early? All these questions and options with no answer that would make everybody happy … this is what drive me insane. I know I should just take it one day at a time. I try. I can’t. I think about it every waking hour and have dreams about it in my sleep.
So there you have it … another one of my rants and not so much raving this time around. Additionally, I am not in much of a mood to post pictures into the blog. Instead, I have compiled a video of Jennah’s year of epileptic episodes. It’s hard for me to see and remember what we went through, but at the same time I appreciate how well she is doing now. Sorry about the music in the video … it came with the computer, LOL. I had wanted to use “Miracles Happen” by Myra, but I couldn’t allow myself to pay $0.99 to download it nor could I bear breaking any copyright laws (damn Microsoft for ingraining these ideas into me!). So maybe you can find it on Youtube (http://www.youtube.com/watch?v=UKgqnSo6_ME&feature=related) and play it while watching the video … ;-)
Or better yet, click on both of these videos and turn down the volume on the Jennah video to get my intended effect ... there! a work around that doesn't infringe on copyright laws ... the things that make me happy. :)
Oh, and HAPPY NEW YEAR!! Wishing all your families hope, love, and prosperity in the new year.
Love to all …