July 28, 2010

>> Wednesday, July 28, 2010

He had a couple of bad nights followed by a couple of good days. Int he last 48 hours...only two.

The one this morning was deceitful though, it seemed like it was a fairly minor one but it took him out for a few hours. Slept off and on for 2 hours. In fact, he has been sleeping a lot lately. Two naps a day for the last 4 days. Could be a sign that things are changing...hopefully for the better.

We will see and we will simply hang on to that little hope of the tubes helping him.

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All-consuming

>> Wednesday, July 21, 2010

2 events.

Although one is actually up in the air. It could have been a seizure or he could have startled himself awake. Either way he went right back to sleep. In the morning, he woke up energetic. We heard the door open and close several times, he played in the bathtub and jumped on our bed. At the bed-jumping point we got up and sat with him. We talked about his appointment tomorrow and Glenn got up to get ready for work. That's when Bug fell over. Complete drop. Absolutely limp. Took him a few minutes to come out of it and he was combative. I gave him his medications, fed him breakfast and Daddy took him to school.

It was then I took a breath and decided to play around on Facebook. I began to notice all my friends and groups have changed...they have all become Epilepsy focused. Not a bad thing, they are good people but WOW. Epilepsy does take over everyone's lives once someone they love have it. And it should, it needs to in order to be confident that your loved one will not get hurt. Diligence is key.

Also, communication is paramount. An organization of people living with Epilepsy can educate better and more effectively than one trip to a Neurologist. I like the new direction my online friends have gone, the support is so very important. Because Epilepsy sucks and it's extremely depressing when the new medications don't work or the old ones become less effective. It's impossible to go it alone and so...I'm not.

Thanks Epilepsy Friends! We love you!

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July 20, 2010

>> Tuesday, July 20, 2010

6 events.

I guess the med change is not helping. Damn. It's so demoralizing. He has a good couple of days and we see Bug coming back to us and then he seizes and disappears. I suppose that is the completely inappropriate to say, he is, after all, still in front of me, still smiling, still enjoying himself. It's just difficult to see him day after day coming out of these things. He reaches for me, he holds my head and touches my hair and grips so tightly I think I will explode with sadness.

He has an ENT appointment in 2 days. Only means he will, most likely, have tubes put in his ears. Nothing more. I have given up that little hope that anything will help him talk, that anyone has any answers. I have resolved myself to just trying to help when we can, and accepting more than fighting. Is this a permanent position? Most likely not, but it is one of those days.

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July 16, 2010

>> Friday, July 16, 2010

3 seizures before 1am.

He had a busy day. We went to the Alpine Slide with Aunt Karen and her family. Bug, Danny and I didn't go on any rides but Tay had a blast! I have some video that I will say I will post but what are the odds?

I am increasingly heartbroken about his new seizures. I am becoming physically ill over it. And today I will be channeling all my positive thoughts into the Gallery for EAU and UofU. Distraction is important but the lack of response to request for assistance in naming the Gallery has me thinking that people really do not want to see Epilepsy. They do not care about it, even after they have seen it, lived with it. I have no other way of thinking. It was a simple request.

Back to feeling alone and isolated.

I reached out to comfort him last night and I thought: This will never end. It will be his life until it kills him, as it has a chance of doing. Negative thoughts can be just as motivating. I woke up and looked over to make sure he was breathing and I hoped for a good day ahead. But really, I know he will have at least 2, possibly 4 more seizures.

It's all very depressing.

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July 10, 2010

>> Saturday, July 10, 2010

5 events.

May have been 6. Each was T/C and each lasted less than 15 seconds. He immediately went back to sleep.

It was a rough night. When he wasn't seizing, his sister was putting her legs over him. I would feel her feet kick my side (he was between us) and I would move her feet off. After the third time doing this, I started throwing her feet off. She stayed asleep the entire time, not once did a seizure wake her. THIS is why Tay doesn't sleep with us usually, but it's just how we ended up after cuddling.

Bug is good this morning, he woke up grinning. I gave him his medication immediately and he is playing with his Doodle Pro. No worse for wear, it appears. I am on high alert today though and we probably will NOT go swimming, or at least Bug and I won't. Sad, just sad. But maybe we will put the pool up in the backyard.

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Fax U

>> Friday, July 9, 2010

Why can't it be easy to get medical records? I must qualify, when I went to Henry Mayo Hospital in Santa Clarita and asked for Bug's records they smiled, and said: Have a seat. And 35 minutes later I had a CD with EVERYTHING on it. Wow.

So I did the same thing to UCLA and to EVERY Neurologist he has had and I got: K, we will copy them, for 40 bucks, and you'll have them in 6 to 8 weeks. That's confusing, I didn't think I was ordering the Fushigi. Huh.

And I am back at it again. No matter really since I need them anyway, but OMG, why does it have to be such a PITA?

We are attempting to get an appointment at the Barrow Neurological Institute in Arizona and they need his records FIRST. So, I am getting them and then I am getting him an appointment. But first I have to either download, or be emailed the records release form. THIS is where it's a PITA...the form is NOT easy to find online and when I left a message two hours ago to have it emailed...well let's just say I used my search engine prowess and found it myself. Thanks for the...ya. So I have to fill it out, fax it to the PCMC and then they will fax it to The Barrow. Mmm...K. That's a bit of faxing.

He is refusing to eat and just looks different. He wouldn't go to sleep last night, at least not easily, so maybe he is tired. Only 7 hours of sleep is unusual for him now. I feel like we are back in the days of Bug at 4 years old. I hope not.

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July 9, 2010

I was about to write 'No Events' when he went stiff and fell over. Tonic. Luckily, he was sitting down. He did go a full 24 hours with no known seizures and this one lasted just long enough for me to stand up and get to him. So less than 10 seconds.

Make that 2. I had to stop writing because he wanted to cuddle. Not a bad trade off as far as I am concerned. Not a bad trade off at all. After a little less than 45 minute cuddle he decided to play, walked over by the kitchen window and fell down against the wall. Big thud. He didn't even drop his Doodle Pro but it scared me.

I have given him his medications and he is laying on the couch playing, intermittently rubbing his head. :(

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NOT a dry spell

>> Thursday, July 8, 2010

Posting may have been slim, but Bug hasn't stop having at LEAST 1 seizure a day for the last week+...sometimes up to 4.

He had a couple of bad T/C's that lasted almost 2 minutes. Really, I don't know what to do. We can take him to the ER but should we HAVE to? I mean, he has a flipping Doctor...

Depression is the word of the day. I will have some Coke, cuddle with boy, get us out of trouble with our landlord and hopefully, have a nice calm day. It's all about the hope, and what kind of power is that?

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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