Saturday, April 5, 2008
The "S" Word
Early saturday afternoon and if you can believe it , the house is empty except for Zoey and I . The peacefulness is nice but I really do better when surrounded by people. My mind wanders too much otherwise. We had a fabulous celebration for Jess. I have a large extended family and I love being all together. Chaos, but wonderful at the same time. Jess headed back to Pepperdine, Caitlin is in San Diego, Taylor at work and Mark and the boys are at Jake's baseball game. As for Little Miss Zoey ...... asleep. She is weathering her ACTH fairly well. She is EXTREMELY cranky however. Imagine your worst colic and magnify it by 1000! Zoey is on a very low dose protocol of ATCH due to already dealing with cardio myopathy(thick heart) so I cannot imagine what she would be like on a regular dose that is some times 3x what she takes, her dose is .1ml twice a day! She is especially irritable with me. I think it is because her appetite has increased so much due to the medication and I am the feed source and I am literally nursing her every hour. It is insane. It would remind you of a newborn where you feed them on demand. I welcome the chance to have a extra hand around for her sake as much as mine. She is much more content in the arms of someone else. She sleeps great though. Two nice naps a day and she sleeps all the way through the night. I am thankful for that and it gives her a chance to rest her tired little body. Now, most are wondering, "So what about the seizures?" Here's my take on it. How ever bizarre it my sound. And those who know me , know my mind can go every where and any where! My sister once said that my mind would be a nice place to visit but she wouldn't want to live there! Anyway, when the girls were little there were absolutely certain words we didn't like said. One being stupid the other shut-up. So they were referred to as the "S" words. The girls would hear someone say one of them, gasp, and utter, "Mom, they said the "S" word." From now on, seizure is the next generation of "S" words. I have instructed Mark not to ask me about the "S" word, only say " So, anything?" in reference to activity throughout the day. I know, crazy but I feel if we talk too much about the "S" word it will rear its ugly head in full force again in our home and I am on my knees praying daily that they will continue to make themselves less and less visible from our lives. Zoey's life. So , I will leave it at that. Read between the lines if you must but when you do please follow it with a prayer. I thank you and Zoey most certainly thanks you too!