Kind of at a loss as to how to start and write the blog tonight. Chuck’s parents have been in town for a few weeks to help including helping with bedtime. Since I usually blog when I sitting with Gabriel after he goes to sleep I feel behind on the stuff of “blog world”. I’ll start with the latest on seizure activity and health.
Gabriel had 3 seizures today. 2 of them were drop seizures followed by what I call the 1/2 tonic clonic. Tonic clonic are what you think of when you hear seizure. The 2 seizures today including the tumors and rhythmic jerking but he is somewhat aware and tries to move but can’t totally control his movements. Frankly, they just stink! We haven’t seen these for several weeks. G was having tons of these right before Chuck’s parents came to help. Until today G had been having 1 tonic, clonic during sleep at night usually between 4 and 6 a.m. I was excited when he didn’t have one last night….I need to learn not to be excited about this….the last 2 times he didn’t have one at night the next day the 1/2 things started. Hoping today is the only time we see them.
In the meantime, we are moving forward in our preparations for our trip to John’s Hopkins in Baltimore. We are supposed to get all of Gabriel’s medical records and bring them with us. The doctor will look at them while we are meeting with him. From what I understand at this point, Gabriel won’t have any tests, blood work, etc done while we are there. I wish I were more excited about the trip. I am nervous about any changes that might be made because most changes bring about tough times before they get better. I am glad we are going…figure the more eyes we have an Gabriel’s case the better.