Sunday, September 27, 2009

60th Birthday Party Pics!

Yesterday my Grandma Gwen had a 60th birthday party at her house! Everyone had lots of fun- which included a hay ride, a bouncy house, fishing, s'more roasting and family pictures.The birthday girl!

My brother Jason, my Dad and my Mom holding Ayva.


Justin and his beloved hush puppy!

Justin and Elijah

The birthday girl with her 60 glasses on!

Her birthday cake.

My Grandma Gwen and Grandpa Arlin

All of her grandkids leaning in for a birthday kiss!

All of the grandkids.

One, big, happy family!

The daughters
Everyone had fun, and some even stayed overnight and woke up to a wonderful breakfast!

Friday, September 25, 2009

Infantile Spasms Awareness Week

I share with you a letter from a fellow IS family, who says it better than I could.

From: Marissa's Bunny
Sent: Wednesday, September 23, 2009 3:26 PM
To: Ken Lilly
Subject: The Child Neurological Society, Questcor, and Infantile Spasms Awareness

Week Greetings, fellow infantile spasms parents! You may or may not have heard of me or Marissa, but we're in the same boat as all of you. Questcor and the Child Neurological Society are teaming up for an Infantile Spasms awareness week, but it seems to be a very focused event, and is only taking place at the annual CNS convention. This doesn't seem quite right to me. Following is the text that's being posted on Marissa's Bunny today discussing this, and I'd very much like it if you could either link to my blog with the post, or enter the text on your site as well with attribution to Marissa's Bunny.If you'd rather do neither, that's fine too- but please address your blog reading public about this. Questcor has taken enough of our money and uses our children as shining examples of how their business process helps us, and disregards the fact that our insurance companies have paid them hundreds of thousands of dollars collectively. They speak a good game of promoting awareness, but I still have yet to see anything tangible, and buying a buffet table at a neurology convention and calling it "awareness" seems hollow to me.It's hard to get a group of anybody to do anything in conjunction. Maybe this time, if we all speak out at once, we can get something tangible to happen. Please send this email to any other IS bloggers you may know. If awareness is what they want, then awareness is what they will get.-

Mike Marissa's Dad

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Wednesday, September 16, 2009

22 months

The trio turned 22 months yesterday. Two more months and they are 2. I can't believe how big they are now. Although, it doesn't seem like this year has been moving at all. It seems like we are at a stand still. Tomorrow we will know what Ayva's EEG said, and also we will be talking about weaning Anna off of her Topamax dose. She has been seizure free for 13 months now. I'm sure there will also be talk of putting Ayva on the Ketogenic diet. Which will require at least a 48 hour hospital stay. And also I'm sure there will be talk of the Surgery Clinic appointment she has on the 22nd about a feeding tube. Life stinks. Anyways, we are just taking it one day at a I will leave this depressing post off w/ some pictures.

Also I have a website for my photography. You can go check it out!

Tuesday, September 15, 2009

What Infantile Spasms looks like

As I sat and watched Ayva have her EEG yesterday I thought about her poor little brain. It's probably hard to understand unless you know what brain waves look like when constantly having seizures versus not having any. So the first picture is of a child with Infantile Spasms.

Crazy. The lines are jumping all over and what most people call "chaotic". This is what Ayva's brain waves look like. I secretly watched the screen yesterday (usually they turn it to where I can't see it). I just sat there and stared... I knew what it was saying. Ayva is still having seizures even though I can't tell by just watching her. At some times Ayva's brain waves calmed down, and other times it was even more chaotic. I'm sure the Neurologist will tell me on Thursday what that means exactly. If it's better than before she went on the Depakote, we may try to increase her dosage and see if that helps. If not, then we will be moving on to the Ketogenic Diet. I think this is pretty much our last chance to stop these horrible things. Anways, here is a normal EEG so you can see the difference...The lines are moving still, but aren't jumping all over the page like the picture before it. I think the picture pretty much explains itself. You can obviously tell between the two that one is more "chaotic" than the other. It's just so weird to know your daughters' brain is behaving so erratically. Especially since there is virtually nothing you can do.

Monday, September 7, 2009

Justin aka DADDY turned 25 this weekend!!

We've been pretty busy this weekend. Justin turned 25 on Friday and we went out to dinner. Then on Saturday I had a surprise birthday party planned for him! And on Sunday we all went to Santa-Cali-Gon Days! It was busy, but lots of fun!