Well currently I am sitting across from Daniel who is laying in the hospital bed getting his VMR. (24hr. Video EEG). NOT FUN.
If you want a good laugh (to a not funny situation) find our other posts of our experiences with EEG's. Its a good chuckle to see if Lonnie, or if I will survive without killing each other. See adults can't sleep during this time. One of us has to stay awake to make sure if Daniel makes any weird movements that we hit the button to mark the video recording.
We're not sure if Daniel is having seizures or not, but this is the time that I am going to mash that button at any strange thing that I've seen him do. Anything that might even be questionable. This way I will know for sure in the end.
He is happy now as it lays in the bed with his orange pillow, his sock monkey pj's and his Elmo blanket watching Go Diego Go. This was NOT the case when we got hooked up to all the wires today. The whole time he was getting hooked up (which took FOREVER!) Lonnie kept mouthing to me as I was holding Daniel on my lap, "WE ARE NEVER DOING THIS AGAIN!"
It is traumatic for Daniel (and us). It sucks to see him scared and screaming, with tears running down his cheeks cause he is not understanding why this person is doing this to him.
I think unless Daniel actually has a big seizure, or a notable one at least that this will be the last EEG we get for a LONG time.
Monday, January 12, 2009
Wednesday, January 7, 2009
Thursday, January 1, 2009
Naps and Dreams
Today while putting Daniel down for a much needed nap, I watched him. I've been nervously lately that he is having some sort of seizures again.
I watched him look around, his eyes getting sleepier and sleepier, the blinking of his eyelids getting slower and staying shut longer and longer. Took him a while to fall asleep, he'd close his eyes and open then again just when I thought he was asleep and he'd smile at me, give a little giggle and close those big beautiful brown eyes again.
We were laying on our sides, face to face....I could smell his milky breath. His arm was slung over my neck because he was patting me on the back, just like I was doing to him. Made me smile, and I thought to myself, that I could stay like this forever. Nice, warm and safe, snuggling in bed.
While Daniel continued to snuggle down into his pillow, I could see he was deep in sleep. He must have been dreaming, as I could see his eyes moving around. R.E.M. And that got me thinking about what Daniel dreams of when he sleeps. Is he happy in his dreams? When he dreams, does he dream of himself walking or in his wheelchair? Does he dream he can talk? Is he able to communicate with people, and can they understand him? Does he dream of himself with a disability or does he dream of himself being a typical little boy? Running around chasing a dog, riding a bike, and playing in the house? Or does he dream of me pushing him in his wheelchair and carrying him everywhere in a world that just doesn't see past his physical disability?
I hope he dreams happy dreams, and knows that regardless of a disability or not, that I love him more than words can express.
I watched him look around, his eyes getting sleepier and sleepier, the blinking of his eyelids getting slower and staying shut longer and longer. Took him a while to fall asleep, he'd close his eyes and open then again just when I thought he was asleep and he'd smile at me, give a little giggle and close those big beautiful brown eyes again.
We were laying on our sides, face to face....I could smell his milky breath. His arm was slung over my neck because he was patting me on the back, just like I was doing to him. Made me smile, and I thought to myself, that I could stay like this forever. Nice, warm and safe, snuggling in bed.
While Daniel continued to snuggle down into his pillow, I could see he was deep in sleep. He must have been dreaming, as I could see his eyes moving around. R.E.M. And that got me thinking about what Daniel dreams of when he sleeps. Is he happy in his dreams? When he dreams, does he dream of himself walking or in his wheelchair? Does he dream he can talk? Is he able to communicate with people, and can they understand him? Does he dream of himself with a disability or does he dream of himself being a typical little boy? Running around chasing a dog, riding a bike, and playing in the house? Or does he dream of me pushing him in his wheelchair and carrying him everywhere in a world that just doesn't see past his physical disability?
I hope he dreams happy dreams, and knows that regardless of a disability or not, that I love him more than words can express.
Thursday, December 25, 2008
Unexpected Gift
The holidays I am not very fond of. Multiple reasons why, but we won't get into that. BUT I think I got the best holiday gift I've gotten in a long long time. It was so unexpected, and I don't even think that the person who gave it to me realized.
But in the past couple of days, I keep looking at it. Re-reading it.
When I first got it, I read it and was teary when I was done.
And when I read it days later, I still get weepy.
Here is just a small, little tid-bit of the email I received from Daniel's speech/augmentative therapist. What she writes in incredibly cool (in my book) but so incredibly nice because she didn't need to write anything at all. Completely unexpected, and from the heart.
"I just had to write to say again that Daniel did so great yesterday. Some of my kids just clam up when there is a visitor from school, or they spend most of the session wondering why someone from school is here with them in therapy. Not Daniel! He only had a few perplexed looks, but continued to do his excellent job with his eye gazing, identifying concepts, using the communication device to answer questions and to play and using his yes-no cards and signals (I absolutely love how he picked up the head shaking for “no” – that to me speaks worlds about his potential because he picked that up on his own without anyone having to specifically teach that)."
It is such an awesome feeling to have someone else see Daniel for WHO he is and not WHAT his diagnosis is. She does not judge him. She works beyond what I would ever expect to help Daniel reach his highest potential, and I will be forever thankful to her for that, and for caring about my son. (some of her work here and here).
She believes in Daniel, she teaches Daniel his ways to communicate, and what a wonderful "voice" she has given him.
But in the past couple of days, I keep looking at it. Re-reading it.
When I first got it, I read it and was teary when I was done.
And when I read it days later, I still get weepy.
Here is just a small, little tid-bit of the email I received from Daniel's speech/augmentative therapist. What she writes in incredibly cool (in my book) but so incredibly nice because she didn't need to write anything at all. Completely unexpected, and from the heart.
"I just had to write to say again that Daniel did so great yesterday. Some of my kids just clam up when there is a visitor from school, or they spend most of the session wondering why someone from school is here with them in therapy. Not Daniel! He only had a few perplexed looks, but continued to do his excellent job with his eye gazing, identifying concepts, using the communication device to answer questions and to play and using his yes-no cards and signals (I absolutely love how he picked up the head shaking for “no” – that to me speaks worlds about his potential because he picked that up on his own without anyone having to specifically teach that)."
It is such an awesome feeling to have someone else see Daniel for WHO he is and not WHAT his diagnosis is. She does not judge him. She works beyond what I would ever expect to help Daniel reach his highest potential, and I will be forever thankful to her for that, and for caring about my son. (some of her work here and here).
She believes in Daniel, she teaches Daniel his ways to communicate, and what a wonderful "voice" she has given him.
Tuesday, December 23, 2008
Pint-Size Meltdown
Daniel has started this little thing we call his mini-meltdown. I haven't gotten it on the video camera yet but as soon as I do I'm going to put it on here.
Years from now, I will show people (his high school girlfriend) and it will haunt Daniel throughout his adult life! You know what I'm talking about? Those silly little embarrassing things you did as a child and you want to crawl under a rock every time it gets mentioned? Yes sirree, that is what I'm going to do.
I've also come to the realization that Daniel (and Daddy) watch too much TV. Although to come to his defense, it is somewhat educational!! Regardless whatever the show is, as soon as the credits start to run at the end of the show, Daniel starts with the mini-meltdown. The biggest boo-boo lip comes out and he starts crying inconsolably. This lasts for about 60 seconds until the next show comes on, or until Moose A. Moose starts talking about Zee and what items match or are different on the screen! Then life is good again and we can all be happy.
As Lonnie says, "Daniel, you need to realize there are commercials in life!"
Years from now, I will show people (his high school girlfriend) and it will haunt Daniel throughout his adult life! You know what I'm talking about? Those silly little embarrassing things you did as a child and you want to crawl under a rock every time it gets mentioned? Yes sirree, that is what I'm going to do.
I've also come to the realization that Daniel (and Daddy) watch too much TV. Although to come to his defense, it is somewhat educational!! Regardless whatever the show is, as soon as the credits start to run at the end of the show, Daniel starts with the mini-meltdown. The biggest boo-boo lip comes out and he starts crying inconsolably. This lasts for about 60 seconds until the next show comes on, or until Moose A. Moose starts talking about Zee and what items match or are different on the screen! Then life is good again and we can all be happy.
As Lonnie says, "Daniel, you need to realize there are commercials in life!"
Saturday, December 20, 2008
White Crap Falling From the Sky...
Never fails. When we have something planned, it always has to snow like its never going to snow again. 
Schools were closed and people getting stuck on every side street. Needless to say, the EEG got canceled and we have to reschedule.
So, Lonnie shoveled for hours. We use to think our driveway that holds 4 cars across was pretty nice. Shall we ask Lonnie what he thinks of it now?!?!
Daniel and I decided to make M & M Christmas cookies. We got a mason jar filled with the ingredients as a gift that Daniel did at Preschool. We also decided to try a Pumpkin Roll.
OK so I'm NOT Betty Crocker!
Monday, December 15, 2008
What Is A Seizure?
For people who don't know anyone or have never experienced a seizure, they are pretty scary regardless of the degree of severity. In fact, they are so scary that as an adult who has witnessed seizures in my child, I have horrible dreams about them. When its your child that has the seizures, you are in constant fear that at any moment it could all happen again. Its a fear that rears its ugly head every time there is the slightest fever, the littlest bit of teething. But what is really scary, is that they can come on without any warning signs like a fever. They just happen. They don't just happen when you're in the comfort of your own home, nope they can happen at school, social events, walking from one room to the other. They just appear, and there is nothing you can do to stop them immediately.
Daniel has high potential for seizures. His brain during the developing stage when I was pregnant didn't form the correct way. Because of the brain malformation, his potential for any type of seizures are possible. From the little ones that some people can't really notice, to the absent seizures to the big ones called Grand Mal. Generally people when they hear of someone having a seizure they think about the persons arms and legs flailing about, crying out and falling to the ground. Not all seizures are like that. Some are very subtle, its just a twitch of the eyes, or staring off and coming to, not sure what just happened, you've lost some time. Whatever type they might be classified as, they are scary to the person who is experiencing them. Most of the time doctors must perform an EEG to see the brain waves, and hopefully during the time of the test, will catch the movement you believe to be a "seizure".
Daniel's first and only type of seizure so far (knock on wood) have been Infantile Spasms (aka West Syndrome). These rank up there with the grand daddy of seizures. They cause many horrible side effects, and if not controlled can cause a child to regress to infant stages. Sometimes they lose the ability to eat, they cause the brain to be damaged beyond what you can imagine. The brain fires when its not suppose to, causing the brain not to be able to do what its mean to do which is learn.
Along with the damage the seizures are causing, add onto that the medications that you have to give to your young child to attempt to control the seizures, that can stunt the proper development. Most of the time, not just one medication does the job. Most kids are on a "cocktail" of drugs in hopes to stop the seizures from happening multiple times on a daily basis. Daniel was first put on Klonopin and Topomax, not a good mix for Daniel, he continued to have seizures. Then Vigabatrin was used and fortunate for Daniel and us, it worked. Daniel was one of the few children to be on a "mono-therapy", meaning one medication alone stopped his seizures. This worked for about a eighteen months with no seizures. Then out of nowhere they popped up again. See you're never safe. We tried upping his dose, adding on Zonegran. Nothing was working. So it was the mixture of Vigabatrin and ACTH for 6 weeks. This seemed to do the trick. Fast forward to now, and we are completely off all seizure meds. Scary? you bet!
The reason I am on this seizure topic is that we are fast approaching our Friday appointment to get another 24 hour VEEG. As much as I hate this test with Daniel getting all traumatized by being strapped down to get the electrodes placed properly and constantly watching the video monitor to look for weird brain activity, I like them because it makes me feel safe for a short period of time. It confirms that what I think are seizures, aren't really ( I hope!) Now is about the time I start to get anxiety about the upcoming appointment. What if there is seizure activity? I know we'll just have to deal with it, but it has been so nice to see Daniel un-medicated. Not on brain altering medication. And it will be a testing of drugs because Vigabatrin is used for Infantile Spasms, not the other types of seizures.
For those who don't know much about what happens during a seizure or what it is exactly, here is good little video of it. Take a couple of minutes and go through it, even if you don't know anyone with epilepsy. Just on the off chance you meet someone some day and you need to understand what is going on. Very educational.
Wish us luck on Friday, put us on your prayer lists, rub the budda belly, whatever it is you do for luck. Hope that this EEG turns out good, and there isn't any activity. That it is the same as the last one. Clean of seizures.
Daniel has high potential for seizures. His brain during the developing stage when I was pregnant didn't form the correct way. Because of the brain malformation, his potential for any type of seizures are possible. From the little ones that some people can't really notice, to the absent seizures to the big ones called Grand Mal. Generally people when they hear of someone having a seizure they think about the persons arms and legs flailing about, crying out and falling to the ground. Not all seizures are like that. Some are very subtle, its just a twitch of the eyes, or staring off and coming to, not sure what just happened, you've lost some time. Whatever type they might be classified as, they are scary to the person who is experiencing them. Most of the time doctors must perform an EEG to see the brain waves, and hopefully during the time of the test, will catch the movement you believe to be a "seizure".
Daniel's first and only type of seizure so far (knock on wood) have been Infantile Spasms (aka West Syndrome). These rank up there with the grand daddy of seizures. They cause many horrible side effects, and if not controlled can cause a child to regress to infant stages. Sometimes they lose the ability to eat, they cause the brain to be damaged beyond what you can imagine. The brain fires when its not suppose to, causing the brain not to be able to do what its mean to do which is learn.
Along with the damage the seizures are causing, add onto that the medications that you have to give to your young child to attempt to control the seizures, that can stunt the proper development. Most of the time, not just one medication does the job. Most kids are on a "cocktail" of drugs in hopes to stop the seizures from happening multiple times on a daily basis. Daniel was first put on Klonopin and Topomax, not a good mix for Daniel, he continued to have seizures. Then Vigabatrin was used and fortunate for Daniel and us, it worked. Daniel was one of the few children to be on a "mono-therapy", meaning one medication alone stopped his seizures. This worked for about a eighteen months with no seizures. Then out of nowhere they popped up again. See you're never safe. We tried upping his dose, adding on Zonegran. Nothing was working. So it was the mixture of Vigabatrin and ACTH for 6 weeks. This seemed to do the trick. Fast forward to now, and we are completely off all seizure meds. Scary? you bet!
The reason I am on this seizure topic is that we are fast approaching our Friday appointment to get another 24 hour VEEG. As much as I hate this test with Daniel getting all traumatized by being strapped down to get the electrodes placed properly and constantly watching the video monitor to look for weird brain activity, I like them because it makes me feel safe for a short period of time. It confirms that what I think are seizures, aren't really ( I hope!) Now is about the time I start to get anxiety about the upcoming appointment. What if there is seizure activity? I know we'll just have to deal with it, but it has been so nice to see Daniel un-medicated. Not on brain altering medication. And it will be a testing of drugs because Vigabatrin is used for Infantile Spasms, not the other types of seizures.
For those who don't know much about what happens during a seizure or what it is exactly, here is good little video of it. Take a couple of minutes and go through it, even if you don't know anyone with epilepsy. Just on the off chance you meet someone some day and you need to understand what is going on. Very educational.
Wish us luck on Friday, put us on your prayer lists, rub the budda belly, whatever it is you do for luck. Hope that this EEG turns out good, and there isn't any activity. That it is the same as the last one. Clean of seizures.
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