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!

4 comments:

Dawson said...

Sounds like she is doing great and we praise God for that. We are certainly praying for her. What a FIGHTER!!!!!!

Jeff and Allison

jotcr2 said...

I am glad you could pass by our blog. It sounds like you are in the midst of the treatment for IS, which I have to admit was horrible +++. However we weathered the road, and we now have a delightful little one. When Sheena was on her treatment she was sooooo difficult, and irritable. She was put on high-dose prednisolone despite heart defects, but they also had to monitor that with echo's. Have you considered weighted blankets or the zaky to help Zoey feel at ease? Sheena needed constant patting and holding while she was on Pred, and I only found the zaky later - www.thezaky.com. I bought it anyway and she now has it in her bed at night.

Russ Mitchell said...

Hello

I am a writer working on a story about high-dose prednisolone vs. ACTH (Acthar Gel) as a treatment for infantile spasms. the story is for portfolio.com, and compares the price of prednisolone (very inexpensive) with ACTH (enormous expensive.)

Jo, I wonder if you and anyone else with experience in this area could get hold of me? My email us russ_mitchell @ condenast.com.

Thanks!
R

Russ said...

whoops

the email is russ_mitchell @ condenast.com