Friday, May 2, 2008
It has been a very long day to say the least. Zoey has weathered it fairly well. Probably better then Mark and I. The up side is that Mark ended up taking the entire day off. Which is unheard of. Gave us some time together. Maybe not all by ourselves but at least some time . Wish it were not under the circumstances they were but what can you do? We spent some time reflecting on the last year while we wandered the hall's of Children's hospital. Some tears shed. Other moments of laughter to bring some levity to the situation. Our method of coping. Some may not understand our humor at times during this last year but for our family it has made all the difference in keeping our sanity. The day began with the much anticipated EEG. Zoey has come to HATE being prepared for it. All of it. It use to be the head wrap that bothered her the most, now it is the entire process. She was exhausted before we even began and after crying the entire prep time, she was more than ready to fall asleep. As the EEG began I was able to tell right away we were looking at improved brain waves. There is a very definitive pattern to hypsarrythmia , very chaotic, so to see flat smooth waves, the difference is glaring. Of course I am far from a neurologist but after observing 5 EEG'S it becomes easy to see subtle changes. Hook up was about an hour. Then we cleaned her all up , fed her and waited, and waited and waited some more for her appointment. We must say that we love our neurologist and trust him implicitly. So waiting was not so bad. Dr. Kim came in and did the once over , asked us how she was fairing. I believe her glazed over, bleary eyed look spoke for itself. He told us that the hypsarrythmia was indeed resolved and what he believed to still be seeing was a pattern consistent possibly, with that of a child with Down syndrome. He called the areas deltas and his biggest concern was it could possibly be the last remnants of the hyps. Therefore, because she has come all this way he felt better if we continued for another 2 weeks. Because of her heart issue we came to a compromise to reduce her dose from .15 2x a day to .07 2x a day, with weekly echo cardiograms. Her cardiologist agreed. So, we'll keep going for another 2 weeks at which point there will be no alternative other than to stop then. We were elated by the results but continue to be slightly uncomfortable with the heart situation. Hopefully the reduced dose will keep things from progressing in a further negative direction. We asked a few questions about her stroke site and it's role in this whole picture. They are fairly certain the origin of spasms began there. The hope of course is that this treatment has kicked the brain into a permanent new pattern. I struggle a bit with the fact the damaged portion will always be there and there is no guarantee that the lesion, as it is referred to, won't start kicking off irregular activity again. There are never any guarantees on this journey though are there? In life really. On the other hand he reminded me that 25-30% of children who undergo ATCH treatment will in fact fail. I have to take solace in that. For ONCE Zoey fell into the larger percentage! We are so thankful for the news of today. We will go to bed blessed with the outcome thus far and we will continue with our prayers that Zoey will once again beat the odds and triumph over another battle set before her. Thank you to everyone who has prayed for us today. We felt them. We truly did. I leave you tonight with a photo of a very angelic little lady. We purchased this Ambybed, a baby hammock, for her, after seeing on a blog archive, that her friend Dawson had gotten one awhile back. Thank you to Dawson's family for sharing the idea. We hope it brings comfort and peace to her. We hope it might help soothe her and bring rest to her tired body. Tonight will be her first night in it. We hope it brings her sweet dreams. She deserves them.