Today Evan got off the bus teary-eyed because, although he didn't have the words for it, he was a victim of discrimination. Not by some mean kid, but by the transportation department of the school system. They didn't say he couldn't ride the bus...they know that's illegal and would never do such a thing.
But they did single him out because he has epilepsy and insist that he ride sitting by the window and next to an adult who has been assigned to him. It took Evan two weeks to bring this up to us but apparently after today he couldn't take it anymore. All Evan wants is to be able to sit wherever he wants on the bus and with his friends. All Evan wants is to be treated like everyone else. Seems a simple enough request.
My guess is the the transportation department just wants to keep Evan safe. Unfortunately, by making him sit next to an adult they have singled him out as being different in a situation where it was unnecessary. My expectation is that next week the "assigned adult" will sit in a different seat where he can be close enough to see Evan.
Friday afternoons are not productive for dealing with such issues so I'll detract my claws and wait until Monday, however, my manicure is already scheduled for Sunday.
September 17, 2010
August 27, 2010
Sigh...
Anyone who knows me, knows I am pretty much always able to put a positive spin on things. I can turn any comment into a compliment and am generally a pretty positive person. It's a gift and a curse.
Right now I'm struggling with that very thing. In the last two weeks, Evan has had two seizures that have lasted over 10 min. The scary thing is that each seizure he has is longer than the one before. Just to give a little context: A seizure that lasts over 5 min. is considered dangerous and the concern of brain damage increases with the length of the seizure. Evan is having cluster seizures (lots of little seizures a couple seconds apart) so his brain isn't constantly seizing during the full seizure. We were told not to worry unless they reach 10 min. That was several weeks ago when they were only 5 min. long. Tsk, ONLY 5 min. long seizures -- I never thought I'd write that!
Every seizure requires us to give him a rescue drug to try to make it stop and they are happening in the wee hours of the morning in his sleep. Unfortunately they are also happening while we are asleep so we have taken to having him sleep in our bed so we'll wake up. The up side: we have a glorious new king sized bed... however, I'd share a twin bed with Rob for a lifetime if we never had to deal with this again.
Sleep, I've learned, is over-rated and craziness is something to embrace.
How does Evan feel about all this? In a word: unaffected. He wakes up in the morning, gets out of bed and acts exactly the same as he does on the days he doesn't have a seizure. Sometimes his balance is a little off but that's about it. Sometimes he remembers it, sometimes he doesn't. We talk about it at breakfast and go about our routine. I suppose this is the bright side I should cling to, that Evan handles it better than us.
I just looked at him, sprawled across or bed, somehow managing to fit across the whole king and I am reminded how lucky we are. Two great kids who fill our home with love and laughter...it makes a mom proud!
Right now I'm struggling with that very thing. In the last two weeks, Evan has had two seizures that have lasted over 10 min. The scary thing is that each seizure he has is longer than the one before. Just to give a little context: A seizure that lasts over 5 min. is considered dangerous and the concern of brain damage increases with the length of the seizure. Evan is having cluster seizures (lots of little seizures a couple seconds apart) so his brain isn't constantly seizing during the full seizure. We were told not to worry unless they reach 10 min. That was several weeks ago when they were only 5 min. long. Tsk, ONLY 5 min. long seizures -- I never thought I'd write that!
Every seizure requires us to give him a rescue drug to try to make it stop and they are happening in the wee hours of the morning in his sleep. Unfortunately they are also happening while we are asleep so we have taken to having him sleep in our bed so we'll wake up. The up side: we have a glorious new king sized bed... however, I'd share a twin bed with Rob for a lifetime if we never had to deal with this again.
Sleep, I've learned, is over-rated and craziness is something to embrace.
How does Evan feel about all this? In a word: unaffected. He wakes up in the morning, gets out of bed and acts exactly the same as he does on the days he doesn't have a seizure. Sometimes his balance is a little off but that's about it. Sometimes he remembers it, sometimes he doesn't. We talk about it at breakfast and go about our routine. I suppose this is the bright side I should cling to, that Evan handles it better than us.
I just looked at him, sprawled across or bed, somehow managing to fit across the whole king and I am reminded how lucky we are. Two great kids who fill our home with love and laughter...it makes a mom proud!
August 05, 2010
Insert Expletive Here
We got home last night after several days of EEG monitoring and some medication adjusting and everything seemed to be going well. Evan's EEG was calm and I was hopeful we finally had a solid dose of meds to keep the seizures at bay.
This morning at 5:30 Evan had another seizure. (big sigh)
So tonight we upped his Keppra. Again. We have seen some improvement with this drug and as we've increased it, we've seen his seizure activity go from once a week to once every two weeks and most recently 2 1/2 weeks between seizures. Our fingers are crossed that with this increase we will have seizure control.
This morning at 5:30 Evan had another seizure. (big sigh)
So tonight we upped his Keppra. Again. We have seen some improvement with this drug and as we've increased it, we've seen his seizure activity go from once a week to once every two weeks and most recently 2 1/2 weeks between seizures. Our fingers are crossed that with this increase we will have seizure control.
August 04, 2010
Freedom!
After four days of video EEG monitoring, we are going home! Evan's EEG was pretty clean witch is good and we are beginning the process of reducing his Trileptal. This is the last meal in the hospital after Evan had the EEG leads removed -- true bliss for the kids: chicken tenders, chocolate pudding with graham crackers to dunk, ice cream and to top it all off, watching TV while eating! Evan told the med student that he liked it there and wanted to stay 70 more weeks, to which the med student replied, "We'll leave at the same time!"
After leaving the hospital we went back to the Ronald McDonald House and after grabbing a quick bite to eat joined a House trip to Central Park Zoo. They shuttled all of us there and we enjoyed a private party at the zoo complete with ice cream. They fed the sea lions and put on a little show and then all the kids got to take a turn feeding them too! It was a great evening and a perfect way to end our stay in NY!
We are on our way back today and I think we're all ready to be home. We are keeping up with the tradition of leaving NYC seizure-free and are hoping to keep it that way!
After leaving the hospital we went back to the Ronald McDonald House and after grabbing a quick bite to eat joined a House trip to Central Park Zoo. They shuttled all of us there and we enjoyed a private party at the zoo complete with ice cream. They fed the sea lions and put on a little show and then all the kids got to take a turn feeding them too! It was a great evening and a perfect way to end our stay in NY!
We are on our way back today and I think we're all ready to be home. We are keeping up with the tradition of leaving NYC seizure-free and are hoping to keep it that way!
August 02, 2010
NYU Hospital: Art Therapy
This is the most common scene in our room and it's not easy to tear them away from their DS games...
Unless it's for art therapy!
Unless it's for art therapy!
July 31, 2010
NYU Hospital: Day 1
Today we checked into NYU Hospital for several days of video EEG (VEEG) monitoring. Hopefully we'll get a better handle on the increased seizures Evan's been having. We are also hoping to reduce Evan's meds. He currently gets medication six times a day and is taking way too many pills every day:
Evan was not happy about having the EEG leads glued to his head but getting unlimited time to play his DS is a plus. We think he looks like a sailor in his fancy EEG cap.
Tonight is my night to spend the night in the hospital and it's always an adjustment being here. There is a child crying in the next room, the little girl in the room with us is coughing as she recovers from surgery on her lung and I'm sharing a twin bed with Evan -- which is much preferred to the foldout chair a lot of parents sleep on!
Tomorrow morning they will draw blood to check medication levels and I'm hoping for the best on that experience. All in all everyone is in pretty good spirits and we're one day closer to coming home.
Evan was not happy about having the EEG leads glued to his head but getting unlimited time to play his DS is a plus. We think he looks like a sailor in his fancy EEG cap.
Tonight is my night to spend the night in the hospital and it's always an adjustment being here. There is a child crying in the next room, the little girl in the room with us is coughing as she recovers from surgery on her lung and I'm sharing a twin bed with Evan -- which is much preferred to the foldout chair a lot of parents sleep on!
Tomorrow morning they will draw blood to check medication levels and I'm hoping for the best on that experience. All in all everyone is in pretty good spirits and we're one day closer to coming home.
July 20, 2010
The Tracks of My Tears
So I'm a complete dork, in case you don't already know that, and was all teary driving into work today listening to Smokey Robinson on the radio...
People say I'm the life of the party
Because I tell a joke or two
Although I might be laughing loud and hearty
Deep inside I'm blue
So take a good look at my face
You'll see my smile looks out of place
If you look closer, it's easy to trace
The tracks of my tears...
So of course the rest of this is a break up song but we have had a rough couple days with Evan and the beginning of the song sort of fit how I was feeling.
On Monday Evan had another pretty bad seizure and today he had a bad toxic reaction to his medication so it's been a bit of a roller coaster. It seems like every week we are adjusting his medicine up or down or adding in something new. Evan is completely unfazed by all of it so we really have to follow his lead, but it isn't always easy.
People say I'm the life of the party
Because I tell a joke or two
Although I might be laughing loud and hearty
Deep inside I'm blue
So take a good look at my face
You'll see my smile looks out of place
If you look closer, it's easy to trace
The tracks of my tears...
So of course the rest of this is a break up song but we have had a rough couple days with Evan and the beginning of the song sort of fit how I was feeling.
On Monday Evan had another pretty bad seizure and today he had a bad toxic reaction to his medication so it's been a bit of a roller coaster. It seems like every week we are adjusting his medicine up or down or adding in something new. Evan is completely unfazed by all of it so we really have to follow his lead, but it isn't always easy.
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