Tuesday February 20, 2013
Today was a very good day. Aaron only had 3 seizures and he was more himself today. He played with his ball, turtle and basketball all day. He has learned to differentiate between his ball and basketball. His ball is "ball" and his basketball is "ba ball". I am glad to see him wanting to play. He also asked to eat today. He has not wanted to eat for so long. He ate half a container of baby food (green beans) and some yogurt. I am hoping that he will want to continue to eat food. Although he is doing good today I am still overcome with fear. Knowing that he needs to drink at 11p and 3a and that he might have another huge seizure scares me. I can't get the image of his purple face out of mind. When he does not wake up at his usual times my stomach is in knots. Is he ok? Is he having a seizure? Did he stop breathing again? are just some of the thoughts running through my mind. Holding him and snuggling with him at night has always been one of my favorite times with Aaron. It is quiet and he is still sleepy and he just melts into my arms. Now during these times he might have a seizure and the feel of his little body becoming stiff is awful. I wish there was something I could do to make it all better. I am hoping for a good night tonight. We need it.
Wednesday, February 20, 2013
cluster seizures
Monday February 18, 2013
Aaron has begun to have more seizures back to back. Last night he had 4 in a row the first time and 3 the next time. It is awful to see his little body jerk and his arms shoot over his head. There is nothing I can do but try to hold his hand and talk to him. He stops breathing but so far just when he gets to the point where I really panic he takes a deep breath. I just want these meds to work. I cant leave him for a second. He pulls himself up on everyone and everything and falls over without warning due to the drop seizures. He will also just fall over when he is crawling. His poor little forehead always has a red mark. He doesn't want to be held, he wants to play. I can tell he feels dizzy. He shakes his head and will hit his head. I can't reason with him just to let me hold him and it is so hard to watch. Dr B increased his Depakote to 2 am, 1 afternoon and 2pm for 1 week then to 2 am, 2 afternoon and 2 pm. I am hoping that this med is going to work because so far he is tolerating it ok. Even though he is not feeling his best he is still giving kisses and still has a smile. What an angel!
Aaron has begun to have more seizures back to back. Last night he had 4 in a row the first time and 3 the next time. It is awful to see his little body jerk and his arms shoot over his head. There is nothing I can do but try to hold his hand and talk to him. He stops breathing but so far just when he gets to the point where I really panic he takes a deep breath. I just want these meds to work. I cant leave him for a second. He pulls himself up on everyone and everything and falls over without warning due to the drop seizures. He will also just fall over when he is crawling. His poor little forehead always has a red mark. He doesn't want to be held, he wants to play. I can tell he feels dizzy. He shakes his head and will hit his head. I can't reason with him just to let me hold him and it is so hard to watch. Dr B increased his Depakote to 2 am, 1 afternoon and 2pm for 1 week then to 2 am, 2 afternoon and 2 pm. I am hoping that this med is going to work because so far he is tolerating it ok. Even though he is not feeling his best he is still giving kisses and still has a smile. What an angel!
My ninja turtles
Sunday February 17, 2013
My boys are obsessed with the Teenage Muntant Ninja Turtles. They LOVE them. I found the outfits and knew they would have so much fun. They jumped around and had "battles" all day.
adorable
My boys are obsessed with the Teenage Muntant Ninja Turtles. They LOVE them. I found the outfits and knew they would have so much fun. They jumped around and had "battles" all day.
Ninja training day 2
Saturday February 16, 2013
The boys had so much fun with Ninja Training last time we decided to do it again this weekend. They are so fun to watch and they take it so seriously.
The boys had so much fun with Ninja Training last time we decided to do it again this weekend. They are so fun to watch and they take it so seriously.
More seizures
Friday February 15, 2013
Aaron seemed to be doing ok yesterday but his seizures returned last night. He has several back to back and then has a hard time returning to his baseline. He is being stressed dosed but he is still not back to himself. I talked with Neuro and Dr B (neuro covering for Dr O) and she increased his Depakote. He is now taking 250 mg twice a day. Hopefully this will help. I am thankful that he is still drinking and so far his temp has been manageable. I am hoping that he will be able to tolerate this medication and we can get these seizures under control.
Aaron seemed to be doing ok yesterday but his seizures returned last night. He has several back to back and then has a hard time returning to his baseline. He is being stressed dosed but he is still not back to himself. I talked with Neuro and Dr B (neuro covering for Dr O) and she increased his Depakote. He is now taking 250 mg twice a day. Hopefully this will help. I am thankful that he is still drinking and so far his temp has been manageable. I am hoping that he will be able to tolerate this medication and we can get these seizures under control.
Valentine's day
LOVE these valentines!!
Keagan was so excited to get home form school today. He is obsessed with our "fun lunches". He kept guessing what kind of sandwich I had made today.
too cute!
Nicholas came home from school and they were so cute showing each other their valentines from school.
Nicholas and Keagan got spy glasses for their gift while Tae and Aaron got the Crawl and Cruise Musical Jungle. They both the love the music and Aaron loves to throw the balls.
home
Aaron is home and is doing ok. Thinking about all of the things with Lennox - Gastaut Syndrome is exhausting. Right now I am going to just focus on all of the positive. He is ok now and I am going to enjoy every second with this precious little angel.
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