When we found out Cole was going to need surgery back in March, I researched everything! During my search, I found this cute little lady...Charlie Claire who had surgery a few weeks prior. Charlie Clair has a twin brother! You can click on her name...it will take you to her blog. Anyways, after finding her blog, I got in contact with her mom and it was so nice to have her there for us cheering us on and giving us advice before, during and after the surgery...because let's face it...nothing can prepare you for what your about to experience....but step by step (along with John's mom and Noah's parents!)...they walked us through this journey we were facing. Charlie Claire had surgery back in February...however those pesky seizures came back because a very small piece of malformed tissue was left, which couldn't be seen because her brain was so swollen near the end of the surgery...Charlie Claire will be having a 2nd surgery (hopefully the last!) on December 7th, in hopes to become seizure free. Please pray for her...we also hope she won't get sick so she can have her surgery as planned. There is so much too worry about in preparing for a big surgery like this. We love you Charlie Claire!!!
P.S. if you need some new lip gloss...go to Charlie Claire's blog, they have Artistry lip gloss (that has a mirror & light on it...pretty amazing if you ask me!)...the proceeds go to Charlie Clarie's medical fund!
P.S.S. Cole signed "more" today day at school so he could get more goldfish crackers!
We were excited for Cole's first "real" Thanksgiving this year (the 1st: he didn't eat food yet & the 2nd: he was on the Ketogenic Diet), instead, Cole was throwing up and sick most of the week. Luckily daddy had Thanksgiving & the weekend off...so he was able to take care of him while I was at work...perfect timing on his part...so I didn't have to use sick hours and miss work! Maybe he can catch Thanksgiving next year.
...And, to get into the spirit of Christmas...our good friend who is an amazing musician (and so nice to perform at Cole's benefit concert earlier this summer) has a FREE song that you can listen to & download called "That Spirit of Christmas" ...enjoy!
Wow! It's been 3 months since Cole's surgery. The 10 days he was in the hospital, really seemed like we wouldn't be able to leave...every day seemed to get worse and worse. It was an adjustment, but AMAZINGLY worth it!
Here's a run down of the pre-op & post-op of changes in Cole:
Here's a run down of the pre-op & post-op of changes in Cole:
- Cole no logger needs to wear his helmet (because we haven't seen any "S"s!).
- instead of staring at the ceiling, Cole actually looks at us!
- figured out how to crawl (he didn't crawl much, so he's going back to learning at a 10 month old level)
- he doesn't "hand wring" or do brain simulations like he used to.
- starting to babble.
- plays with toys a little more.
- we don't have to take his stroller EVERYWHERE anymore! (we used to have to take it everywhere, even to church!) His brain couldn't process walking from the car to the front door...it was too far for him. Now, he always wants down & loves to run, run run!
- he gets on the couch ALL BY HIMSELF!
- is super happy now & doesn't seem to cry like he used to.
- holds our hand.
- pays attention to the dog.
- rubs our arms.
- responds when his name is called.
- climbs the stairs.
- starting to give "high five's"
- he gets "scared" now.
- can tolerate loud noises (not always, but MUCH more then he used to!)
Today was my first day back at work from taking 11 weeks of medical leave for Cole's surgery. We are SO lucky to have an amazing family watching Cole! It's perfect because they are in our boundary...so the bus picks him up and drops him off at their house. ...it couldn't have worked out any better! The day went REALLY well...except when Cole came home on the bus with a mouth full of wood chips. Cole's baby-sitter went to get him off the bus and the assistant on the bus was trying to get them out of his mouth...luckily our wonderful baby-sitter sprung into action and got all of them out...scarey! I am not sure how long he had them in his mouth for...but I'm so glad he didn't choke on them. Cole is fast...and he's like a "walking 10 month old"! On the way to work I prayed that Cole would be safe at school, on the bus and at his baby-sitter's...I don't typically pray that he will be safe on the bus, but today I felt different, and felt like I needed to pray for him to be safe in those specific places....and I'm glad he's safe!
I've had people asking questions about Cole...and for videos of him...so, here is a video & the q&a part I will try to get to soon! The is a video of Cole going up grandpa & grandma's stairs for the *FIRST TIME* since his surgery on October 26, 2011. Enjoy! I'll try to post more soon.
I love this little boy so much! It is so crazy how much he has changed in the last 2 1/2 months since his surgery! He is ALWAYS smiling now...before the surgery it seemed like he was always crying (I guess I would too if I was having 150+ seizures a day). When he was a baby (before the "S"s started) he was SO happy....always smiling at EVERYTHING & ANYTHING! It was REALLY hard to see him change practically overnight when the chaos began. But, it's been REALLY fun watching the "new" and "good" changes that have come since his surgery. He looks so grown-up now!
My mom got Cole this little toy that sounds like a bird when you shake it. She got it for him a few years ago, he would NEVER play with it...sounds were way too much for him...he's been "playing" with this like crazy...he even learned how to shake it all by his self!!!
I love Cole's teachers....they send this green page home every day to tell me about his day...
And, last but not least...I FINALLY get to do his hair!!!
(look how SWEET this banner is....I think it's AMAZING!!!)Quiksilver in Lakewood Colorado held a fundraiser event for Cole. I CAN NOT thank you enough for your help and hard work!!! Really...you guys are incredible. I know how much work goes into these fundraisers and they aren't easy...I really appreciate you guys! Thank you SO much for your Love & Support towards our family...especially Cole. It means SO much to us! I also want to thank each of you who donated items to the auction as well! ....Casey, you are AMAZING!!!
Special thanks to the donors and sponsors!!
*Love, Cole's Family*
Remember Cole's friend "Little John" who went to the Cleveland Clinic last November!?! If you don't remember, Little John had a malformation causing A LOT of seizures just like Cole. He had surgery one year ago (by Dr. Bingaman)...John went for his 6 month check up back in June and his EEG was becoming normalized, but wasn't quite normal yet. John JUST had his 1 year check up...and after being seizure-free for for 1 year...HIS EEG IS NORMAL!!!! This is AMAZING news & I am SO happy for them! Read his story here. When Cole goes for his 6 month check-up...if he still hasn't had any "S's"...his EEG will likely not be normal...but we are praying Cole will follow in John's footsteps for a normal EEG & no "S"s! Way to go Little John...we LOVE you buddy!
He looks like he's totally into Halloween...but he didn't really care, he was just happy!
We took him trick-or-treating with his cousins.
Cole doesn't like candy or sweets (I think because he's never really had it...and he COULDN'T have any when he was on the Keto-genic diet), We gave him a cupcake for his birthday and he was screaming because it was in his mouth...so we swooped it out. I thought I would give him some of his chocolate I was eating...bad idea! At first he seemed like he didn't mind it, but the more he tasted it, he started to gag and threw it up...just from a tiny piece. I wonder what it tastes like to him...because it tastes delicious to me!