Have you ever had one of those days when everything you touch turns to chaos? When you put one thing away in the cabinet, and five things fall out? When you try to pour one small glass of soda, and the entire contents of the bottle somehow ends up all over your kitchen floor? Yep, that about sums up my day. One step forward, two steps back. Have I been more positive today? No! I have been counting seizures, over-analyzing every move Levi makes, and driving myself crazy wondering what to do about Sabril. I have been tired, sad, weary, exhausted, and frustrated. I have had a headache and body aches that won't go away no matter how much caffeine I drink. I have completely stressed myself out. But tomorrow will be a better day. I know this because 1) I'm choosing to change my attitude, and 2) I've made a decision about Sabril. I really wanted this to be our wonder drug, but it seems to be making everything worse. Levi ended up with 91 spasms today. That's more than he had before he started Sabril. So, I've decided to speak with the doctor tomorrow and ask her if there is any likelihood of Sabril becoming successful, given the way it's affected Levi so far. If the chances are slim to none, we plan to stop it and discuss a different medicine. I just don't know what else to do.
Levi was pretty much the same today as he was yesterday. I had to wake him up at 8:30 to have breakfast and take his medicine. Like me, he doesn't like to eat as soon as he wakes up. He was sleepy, not yet hungry, and having so many seizures that it took me an hour to get everything down him. That was a first, and I hope not to repeat it! He was awake longer than I expected, but he has that dazed look on his face. He actually looks feverish....glassy eyes, limp body, slow moving. He just looks miserable. It's heartbreaking to see him like that, especially when he just really perked up last month when the neurosurgeon adjusted his shunt setting. I'm really looking forward to speaking with the doctor tomorrow. I'm interested to hear her opinion.
Tomorrow we have a meeting with all the therapists and case manager to add vision therapy. Becky will then begin visiting twice a month. Diane, the OT, will try to get some therapy in with Levi during the meeting since I had to cancel last week. I hope he's awake enough to cooperate. But even if not, stretching and weight bearing exercises can be done while he's sleeping, and will be beneficial to him.
Seizure Diary - Spasms 91 in 20 episodes; Ticks - 10
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