Tuesday, May 6, 2008
Joe loving on Zoey
Today was one of those days that feels like the morning was a completely different day. One of those days that feels so long that I barely remember the beginning part. One of those days that if someone were to try and tell me an event that actually did occurr this morning, in fact was on a previous day, I would probably believe it. One of those days, that as I am writing this, I am pretty confident that those of you reading this are saying," What in the world is she talking about!" Well, it's definitely been a long day. Zoey and I headed to Children's at 6:45 for another sedated echocardiogram. She was a real trooper, as usual. Sedation at 8:30, echo at 9:oo, with her cardiologist popping in to check things out. Zoey's Hypertrophic Cardio Myopathy has increased again. A little disappointing but not unmanageable. Seeing we are in the process of weaning her ACTH, her cardiologist is confident we should not be seeing any further increase. As long as there is no blockage, we can continue this path with no beta blockers necessary. Thank goodness. We go back in 2 weeks for a recheck. By that time she will be off her meds for 4 days. Hopefully the heart issue will start to resolve and we can file this under, crisis averted. The rest of the day was filled with the usual stuff that makes up the life of a busy family of 8. Physically demanding as well as emotionally demanding. The toll of the last year begins to show in all of us in one way or another, including and mostly especially, the little guys. I yearn to bring back some normalcy to their lives. And try and try as I might, I feel I often fail. Another one of those guilt's I carry. Sorry, fatigue has caused me to digress. I will not torture you with the tedious ins and outs of the rest of the day. Most come to check in on the little Princess. So, as far as she goes, well, she's going. Exhausted. Not eating her solids ..... at all. Sleep continues to be so-so, even loving her hammock. She is still up every hour or so. Makes for very long nights. I will be glad when her sleep returns to a more normal pattern. She does seem a little less irritable since the reduced dosage. She wants to cuddle more, where as before it was as if it actually hurt her to be held. We are loving being able to love on her more and happy for her to want the loving! She was a little more out of sorts today. Maybe because of the lingering effects of the sedation but it caused me some worry. At one point she made a face and movement that reminded me of when she was having seizures and it truly made be feel sick to think she was maybe having one. I am becoming increasingly anxious about the wean and the possibility of the return of seizures. It is a very real possibility. I need prayer for Zoey, as always, but I ask you to put me into that loop today too. I need people to pray for me to let go and give this to God. To know I CANNOT CONTROL THIS or anything else to do with Zoey and the plan HE has already set forth. Faith and humanness. My biggest struggle. Sorry folks, that's all I have today. It has been a long day.