Sunday, April 20, 2008
Sunday check in
Mark just left for church with the kids. Sad for me as I look forward to that time and place to be all together. For the duration of Zoey's treatment and for several weeks later, her and I must stay clear away from crowds due to her suppressed immune system. Church will wait. I have just laid her down in an attempt to try a nap because yesterday she did not sleep, for even a minute, all day long. Not terribly miserable but certainly not happy. I managed to get 3 bowls of cereal with fruit or veggies into her and that made me, and I think her tummy, feel good. This morning however she wanted no part of it. I'll try again later. Sleep was so-so last night. Up three times... I think! I just kinda nurse her and lie her back down and if she stays quiet I count myself lucky and try to get a little more sleep in. Thank goodness I operate fine on minimal sleep. My dreams were crazy last night. They all involved Zoey and medical issues of one kind or another. One had to do with her kidneys, which is weird because it's the one system she has never had problems with. Knock on wood. The rest were all over the place. I think if I had to analyze it, I would venture to guess it is due to a few impending things on the horizon. One, she heads to the cardiologist to check on her heart tomorrow. I'm anxious to find out if her "thickness" has remained statue quoe. Let's all pray it has. I hate that it was an issue to begin with as it becomes more of a reality that we could face a complication / side effect in that department. The second issue is her next blood draw. She is due in a few weeks however one of the things this ACTH can do is mask potential problems due to it's steroid type influence. Meaning, her marrow could be up to no good and we wouldn't be able to tell. Soooooo, we put it off by a month or so and pray there is no change and we have risked losing precious time. I believe I am in my "When is another shoe going to drop" mode. I am also extremely nervous as we draw closer to the wean of the ACTH. Weather or not we see reemergence of her seizures weighs heavy on my mind. I have absolutely no idea what the percentage for recurrence is or the time frame. Quite frankly I don't think I want to know. Zoey is in a symptomatic category for her infantile spasms. Meaning we THINK we can pin point a cause. One is being Down syndrome and the other is her stroke . Both of which are NOT going away. So I often wonder if those things essentially caused the seizures how can we be certain they will not return because those two issues will still be present. Follow me? The bottom line I guess is, we can never be certain of anything. It becomes a clear case of me relinquishing control once again. It becomes a clear case once again of acceptance of where we are right this second. Tomorrow will at least yield some answers in how her heart has weathered the latest dose increase and the rest I guess I will try to take as it comes. My biggest challenge. Today would have been a good day to be at church but I'll do my ritualistic shower praying instead and that will suffice. I hear Little Miss Zoey beckoning for me. I think that was a 30 minute siesta, not bad, I'll take it. My best to all who drop by and check on us. Just knowing people take the time to check in really means alot to us and please keep those prayers coming not only for Zoey but for any of her other little friends you may be keeping tabs on. We all appreciate it immensely.