Thursday, August 9, 2012
Being A Little Too Human
How did a post a day become a post per week become a post every two weeks become a post every month? 3 kids, that's how it happens. I love them so much but they keep me so very busy. I wouldn't trade it for anything in the world! But do I regret the hysterectomy and ending the chance to ever do this again? Absolutely not! I can say it was probably one of the best decisions I have ever made (except for marrying my husband and having 3 beautiful children). I am still exhausted though. SO very exhausted but it's a totally different exhaustion than it was before. Before it was the can't keep my head up kind of tired from the anemia and now it is the kind of tired where my mind just won't stop. I think about how blogging used to relax me and now when I think about blogging I realize I can't even pick the thoughts apart to record them. So here's the bottom line. I'm scared. I had talked awhile back about Anna's neuropsych testing. At the time I just thought we were having it done because it would help us to know strengths and weaknesses and how best to help her learn. And all of that is true. It did/will do that. It will help her get services at school. That was the bottom line for me. But still, it broke my heart to be told she has an IQ of 78 which falls in the borderline range. It broke my heart to see the written words "cognitive disorder with deficits in mixed receptive-expressive language disorder, visual motor, visual-spatial, and fine motor skills, short term memory/working memory, and executive functioning." It broke my heart to be told that setting up a trust for her for when she gets older wouldn't be a bad idea. It is not that I am letting them tell me what my kid will not accomplish but what it is doing is making me take a hard painful look at reality. It has been hurting my heart but I keep going on. Fast forward a few weeks. I notice Anna is having many more seizures. She is falling more and her whole attitude is different. We stopped the periactin in hopes that was the problem and it has helped some but that wasn't all of it. So I called and spoke with her neurologist and I was hoping for a med change. Wrong. Instead we are doing a 48 hr video EEG and another MRI which of course requires anesthesia (this in addition tot he anesthesia she will undergo for the root canal she needs). At Anna's last neurology appointment we had discussed what another medication failure would mean. It would mean that the next step could be surgery to remove the offending place in her brain. When I left her last appointment I was not even rattled by that because I knew it wouldn't come to that. But here we are, with another medication failure and continued seizures despite trials of maximum doses of 2 AEDs (anti epileptic drugs). So now I see why else the neuropsych testing had to be done. It was all in the planning for what Dr. Hernandez knew was coming. It has to be done prior to the surgery, as does the 48 hr EEG and special type MRI that has been ordered. I cannot even discuss it with Kenneth. Don't fault me for that. I'm doing the best I know how to do. I am always the one to make the medical decisions and I just don't know if I can make this one. Do I allow the surgery and the great risk that comes with it in the hopes of a cure and the hopes of stopping the damage the seizures are causing to her memory and behavior or do I let her continue to have the seizures and just keep trying different meds? I don't know. I don't really care for either decision and the thought makes me want to puke. So I am scared. I know God will carry us through this. I know he will. He can move mountains. But today I am feeling just a little too human. As for her starting school, well, that's a whole other post!