There are days that I wish I could just make the world stop. I want to crawl back into my warm bed, and fall fast asleep without worrying about time. I think today was one of those days, most likely because it's been one of those weeks. It's been a week of rushing, tragedies, and busy days at work. Based on my blog yesterday I can now tell you that it was my friend Anna that lost her daughter katy. Her daughter suffered a stroke around 6 years old, and she was a survivor like Jude. We had become friends through a pediatric stroke network, and had big plans to meet the beginning of February. I was heartbroken when I received a text from Anna letting me know Katy quietly passed away in her sleep. Not only did my heart hurt for Anna, but you cannot help questioning your own child's mortality. It's so selfish, but you just cannot help it. I spent the better part of the day yesterday in and out of tears. I finally gathered myself up, and shot into help mode which is my way of coping. Anna emailed me today that she had lots of items for Jude, and again the tears welled up. Not only because I wish her situation was different, but that she would think of Jude right now.
So my tears yesterday opened a huge window of discussion with Mike and myself. Staying together in a tragic situation is extremely tough, and we battle sometimes. We talked about how the question of Jude's health is something most people don't deal with, and it creates stress on us. I think we need some more personal time together, and I plan on making that happen.
Jude has LOTS of therapy appointments, and evaluations at the house today. I am afraid he was turned down on the nursing care. The head nurse explained that without the G button Jude doesn't qualify. She said his cluster seizures are some of the worst seizures out there, but that the insurance doesn't recognize them because he doesn't lose oxygen. Good old catch 22 issues. So my aunt is going to come in once a week to help care for Jude for a few hours, and then we will find someone else to help out too. I have had several emails about watching him.
I did receive a phone call back from Jude's neurologist office about his ice cold hands and feet. They are explaining that this is a circulatory issue, but most likely caused by his brain damage. They are unsure if it is dangerous, and the doctor will want to see us when he gets back from vacation. So we will see what he says. Since this is not something new, I am hoping this is just a non threatening condition.