23 months old!

W.O.W. 23 months old today. I really cannot believe that in one short month my babies will be TWO!!!!! It seems
like these past 2 years have flown by. It will be a happy moment when
they turn 2, but also a sad one. Last year, I was hoping that by this
year Ayva would be seizure free. It's not looking like that is going to happen,
but I try to stay a little hopeful. Anyways, here are some new pics of the trio
in their halloween costumes!




Anna the Kangaroo




"Mom! I don't want to be a kangaroo!"


Justin the Monkey




Ayva the Lion

How it went

Her surgery went well. She had to stay overnight b/c the hospital has a policy that if you are under 2 you have to stay overnight. She will be 2 next month. Anyways I can already tell that this was a good decision we made for her. More food in her belly means more energy! And she is awake more and happy! She's probably also happy b/c she hasn't had to take any of her medicines by mouth since Thursday morning! She HATED her medicine and now she is just overall a happier kiddo! :)

Thanks to everyone who kept her in your thoughts! We really appreciate it!

Tomorrow...

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.

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

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

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.

One, big, happy family!

The daughters

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

HAPPY BIRTHDAY GRANDMA!

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