Tomorrow is Ayva's G-tube surgery. Although they haven't called to tell me what time to bring her, it will be tomorrow sometime. Wish us luck.
I heard a song on the radio yesterday and I instantly thought of my girls (well Ayva especially). It's Rob Thomas- Someday. If you have a chance you should listen to it.
I will try to update tomorrow if I can. I will almost definatly post something on Facebook. Thanks for everyone's prayers and good thoughts for tomorrow.
Wednesday, October 7, 2009
Tuesday, October 6, 2009
Prayers for Trevor!!
Please say a little prayer for Trevor today. He is having brain surgery for the demon in his brain (aka Infantile Spasms). He is such a sweet, adorable little boy.
www.trevorshope.blogspot.com
www.trevorshope.blogspot.com
Thursday, October 1, 2009
Must Read!!
I MADE A WEBSITE ABOUT SPREADING AWARENESS FOR INFANTILE SPASMS! PLEASE GO CHECK IT OUT AND TELL OTHERS ABOUT IT!!!
WWW.WIX.COM/SAUCYSARIE/INFANTILE-SPASMS-AWARENESS
WWW.WIX.COM/SAUCYSARIE/INFANTILE-SPASMS-AWARENESS
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.
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.
The birthday girl! My brother Jason, my Dad and my Mom holding Ayva. Ayva Justin and his beloved hush puppy! Justin and ElijahThe birthday girl with her 60 glasses on!Her birthday cake.My Grandma Gwen and Grandpa ArlinAll of her grandkids leaning in for a birthday kiss!All of the grandkids.
One, big, happy family!
Everyone had fun, and some even stayed overnight and woke up to a wonderful breakfast!
HAPPY BIRTHDAY GRANDMA!
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
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
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 time....so I will leave this depressing post off w/ some pictures.
Also I have a website for my photography. You can go check it out! www.wix.com/saucysarie/sarah
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