Friday, April 9, 2010

Jennah has been seizure-free for ONE YEAR ... Wohoo!!!

That's right! A whole year. April 9, 2009 was the first day that Jennah went for 24 hours without a seizure. They haven't returned since, Alhumduillah! Since last year, we have weaned her from all but one of her medications, which is now a mere 50 mg of Lamictal once a day. Good bye nasty side effects! She is so healthy and so happy now. Her development has noticeably improved. One of the most miraculous is that she can see! Well, at least we think she can and only when she really wants to. We take so many things for granted and it's weird to watch her actively "switch-on" her seeing ability. But I think this is possibly what is happening. She's also getting so big! More difficult on us as we have to carry her around, but well worth it. She is also "talking" soooo much! She laughs and squeals and tries to imitate sounds. It's the sweetest thing to my ears and we can't get enough of it!

As for blogging, I've been terrible indeed. Since the last blog some 3 months ago, I began winter quarter for my Master in Medical Engineering program and it was absolute hell! Thank goodness I have some amazing friends here who helped me through it by dragging me out for coffee dates whenever I had a free moment and especially to my then next door neighbor, Sarah who was at my beckon call and helped with the kids' school pick ups and drop offs.

I hope to blog more frequently (I know, I always say that!), so here's summary of more notable events for now ...
My dear friend Sarah moved away and I was surprised at how much this affected me! Not that I'm cold-hearted, but I'm just not used to having such intense relationships end so suddenly with the possibility of never seeing my dear friend again. Thanks to email and Facebook, we can still chat and keep in touch, but it's not the same as random tea (cuppas) and the UK vs. US English confusion among our conversations. And worse, I know that I will lose more friends as is the nature of our lives here in Dubai. I don't see it getting any easier, so I'm dreading it. All I can say is that I have AMAZING friends here and all over the world and I want to keep everybody around me all the time!

We celebrated Easter, Dubai-style as Aziza's classmate hosted an Easter party complete with egg dying and egg hunt!


And finally, we just had Bassil's 5th birthday celebration. His actual birthday isn't until the 13th, but we had to rush it a bit as a couple of his friends are going on holiday as we are in the midst of Spring Break. Oh the torture of Spring Break ... enough said.
Bassil's Transformer birthday cake! Carrot cake w/ cream cheese frosting, decorated by my beautiful friend, Rima!




Friday, January 1, 2010

Just need to remember, Miracles Happen ...

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 …