Sunday, January 23, 2011

Knock on wood as I type this ...

It's 9:30 am and I haven't seen a single seizure since Emily woke up. KNOCK ON WOOD! Bang bang bang. :) Some have asked me about her medications ... she is now on Keppra and Banzel, both twice a day. She was weaned off Trileptal. She gets klonopin dissolvables orally for seizures over 3 minutes, and then a second dose 15 minutes later if she's still seizing. If she continues to seize 30 minutes after the second dose, she gets diastat. I think that the klonopin stays with her for a while, so it's making her more dopey and wobbly. Usually the first dose of it is knocking out her seizures, but only for a few hours. So she's getting the klonopin 2-3 times a day. I know it contributes to her wobbliness and grumpiness, but it's better than non-stop seizures.

They told me in the hospital last week that if I don't break up the long clusters of seizures, they will lead to status. I am terrified of status. So we do what we have to do to keep her from clustering a long time.

In the meantime, I am doing laundry, cleaning bathrooms, writing tons of notes, and getting ready for my cruise. I leave on Friday, my 35th birthday! :)

Saturday, January 22, 2011

Quick Update

Again I find myself not updating. I am quick to update on Facebook because I can do it from my phone, but I have a harder time sitting down here to really type things out.

Emily is no better. I have had to pick her up from school this week a few times, due to increased seizures. On Friday it was the worst. She has gotten her rescue meds (clonazepam wafers and diastat) daily. Her seizures are out of control. I just emailed the neurologist, and the neurosurgeon. I know the VNS won't help immediately, but the sooner we get it done the sooner it can help. And in the meantime, this is insane. This video shows one of her seizures, it starts at about 55 seconds.

The girl can't even sit up and play without falling over. It's horrible. Her development is regressing before our eyes and it makes me want to scream. I hate this. :(

Saturday, January 15, 2011

How is Emily doing?

I have come to realize that different people blog differently. Some people are able to blog daily, regardless of how busy their lives are, and keep everyone up to date. Some people blog when things are rough, because the support we get online is irreplaceable. And then some of us, when times are tough, bury ourselves in our lives and hide from our blogs. Not that I don't want to blog and tell you all how Emily is doing, but I just can't bring myself to do it lately.

How is Emily doing? The answer depends on who's asking. Most people get the answer of "She's good, thanks for asking".

The honest answer? She's doing horrible. We just had an ER trip for increased seizures and an overnight hospital stay. She had a CT scan (these new seizures are affecting her left side seriously). She had an overnight EEG.

She is now being referred to a neurosurgeon for a VNS. If you are lucky enough to not know what a VNS is, here's a link with some basic information. This is not something that will stop all of her seizures (unless we get extremely lucky, but not likely). It is something that hopefully will lower the number she has each day, and help us control the bigger/longer ones.

Right now all I want to do is grab my girl and rock her in our comfy chair and watch cartoons. Unfortunately real life gets in the way of that, so we forge ahead and try our best to deal with this f*&n seizures.

And that is how Emily is doing lately. :(

Saturday, January 8, 2011

Some relief at long last

Emily is going to step three of four tomorrow on her Banzel titration. That means we are just on step two right now .... and KNOCK ON WOOD ... she is doing awesome! She has had less seizures yesterday and today for sure. The only bad thing is that the side affect is sleepiness/sedation and she was feeling that today for sure. She was whiny and tired which makes her mean. I know she doesn't mean to be, but she scratches you and pulls her own hair and scratches herself, and yesterday she was BITING us like mad! She bit her daddy's finger and drew blood! She bit my head even, when I was holding her up against my chest. She had her head on my shoulder and she turned and BIT my head! Right above my ear, hair and all. Just chomped. At times it was comical, she was just like CHOMP CHOMP CHOMP. We were calling her Piranha Baby all day. Today luckily that was passed. I think it had some to do with her constipation, which she has had all week. Yesterday I finally got her to go, but it had been five days. I wonder if constipation is a side affect of banzel? I will have to google it.

Not much else is going on right now. We are still waiting to hear from Make A Wish about the dates of her room makeover. I hope it's soon, we are definitely ready!!

Tomorrow I am taking the kids to Disneyland while daddy has to work. It should be a fun day!

Monday, January 3, 2011

Happy New Year's!

I wish all my blog readers the best in 2011 and pray for health and calm. :)

Our 12th anniversary was on New Year's Eve. Yay us! Who could have guessed, 12 years ago, that we'd be staying home on NYsEve and playing Wii and not getting drunk? Oops, sorry Mom. What I meant was ... ahh ... nevermind. ;)

Jacob fell asleep at 11:00 or so, and I had promised to wake him up before midnight. Emily had been long asleep, since about 6:00. Unfortunately, the fireworks going off, dogs barking, people yelling, all woke her up at midnight. Once we got her calmed down, it was nice to celebrate the New Year with all FOUR of us awake. We were in bed, asleep, by 1:00 am. Yay!

Happy New Year's to you all!