Update

Here is a note from Debi -

"Just wanted to make sure people know they have until tomorrow...as I am waiting for my therapist for my son to get an order to me in the morning. :)Also, to be clear...the party total is around $600, I don't know what your percentage is, so more purchases would be fabulous!!!!"


Also, just an update on Carson~

Tonight around 6pm Carson was outside playing and tripped and hit her head right where she had surgery. She did bust it open and we were on the phone with CHW.
The on call NS wanted us to drive down to Milwaukee to have it looked at But, also gave us permission to go to the ER here and have a doc look at it to see if it needed more stiches.
I was able to hunt down a local Neuro surgeon and he agreed to meet us here in the ER.

WHEW!

Anyhow, he sealed her up with derabond and off we went. Hopefully, she will not have any other issues.

Nearing the $600.00 mark.

Hi:

I just wanted to let you know that TODAY is the last day to join in on the Discovery Toy benefit that "Who say's 8 is a enough?" has put on for our family.

IF, you are interested in ordering any toys or helping with the benefit, please CLICK the button on my sidebar.

Thanks! And THANKS to DEBI for hosting this party!

Also....I updated my caringbridge page.

Carson's Pictures

Day of surgery

ICP monitor


Happy to see ELMO!

I am NOT happy to be in this bed, but I'll fake it!

Ouch - It's out!

Home

WE ARE HOME!!!

We had a horrific experience with the removal of the probe and screw. Essentially they removed all of it and put in a few stiches without any pain meds. It was so hard as a parent to watch , but knew I had to help console her.

Anyhow...... WE ARE HOME!

Thanks for all your thoughts and prayers.

Hugs!

Update

Hi all, it's Molly. Just wanted to post an update on Carson.

I heard from Cindy just after she went into surgery at 8am, and she wanted me to let you all know that she couldn't access blogger, but would post updates on their Caringbridge website. I have not heard from her as of 10:30am, but keep an eye on Caringbridge for something soon.

Hope all is well!

Switch-o, Change-o

Nothing ever goes easy for our family.

Today CHW called to let us know that a brain tumor case has been squeezed into our NS schedule and asked if Carson could start at 8:00a. Sure no problem. That only means that we have to check in at 6:30....at the latest, AND that we will have to leave home NO later than 4:45am. YUCK!
If all goes well, she should be in recovery by 9am.
I will hunt down a computer while she is in surgery and post updates.

Thanks for everyones thoughts and prayers.

Off to bed....

My scary, crazy, emotional, exciting week

This is going to weirdest emotional roller coaster week I have had in a long time!

My week actually started yesterday with Keegan not feeling well. He vomited, he had a 102 temp, he hadn't urinated in over 12 hours, and we made a 5 hour visit to the ER - all to find out he was dehydrated. Today, he is doing much better.

Today, I cleaned inside and outside my house like a "mad" woman. Tomorrow, I will do the same.

Tuesday, Carson and I will head down to CHW at 6:45 am, to be ready for pre op at 9:15 am. Surgery is scheduled for 11:15 am. I am hoping to god we are home by Friday - I will explain in just a moment.

Wednesday, a blog friend of mine, Debi at Who says 8 is enough?, is hosting a virtual Discovery Toy party. She is doing it as a benefit for our family. Please CLICK the button on my sidebar to check out Debi's page and support discovery toys, and our family.
THANKS DEBI!

Thursday, I am HOPING that Carson will be discharged and we'll be headed for home.

Friday, one of my BEST friends, Molly , and her family will be arriving for a weekend of FUN! Despite my crazy week, I am throwing Molly a "Baby Bath"!! (That's what I am calling a third pregnancy "shower"). A few of my girlfriends who also "stalk" her blog, will help me throw this for her.
I can't wait. It should be a great time. I will be in need of some laughs by that time.

So, that is my busy, crazy, emotional week.

I sure hope I survive it!

Here we go AGAIN

Ok.......
Carson's eye appointment went well today. I pretty much knew it would, except it does not change next Tuesday, the 24th.

Next Tuesday, she will have the ICP probe surgically inserted in between her dura and brain. It will stay they for 2/3 days. During that duration, she will reside in the PICU.

Once again, I will try to be strong for my family. I will reside in the PICU with her the entire time. I will watch my baby come out of surgery, again, and this time with wires coming out her skull.

While we are there, I am hoping to chat with the cranio team to find out what the plan is for her skull reconstruction 2.

So, here's a relaxing weekend and a nerve wracking next week.

Keegan's BIG day!

Finally, some GOOD news around here.

That's right...Keegan has kicked off the training wheels.

WHAHOO!

He is so PROUD!

"Can't look now dad, I'm on 2 wheels!"

Home sweet home

Hi Ya'll:

We are home from a great trip to San Antonio TX.

I will write more later, just wanted to get the pictures up and going.

Riley and her godparents Jerry Z.and Betsy R.

9 kids in a little pool

Betsy and the four kids in our condo.

Uncle Mike and Cooper on the River walk boat ride

The River walk


The Cole Family


Matt in front of the Alamo

Carson cooling off at Sea world

Mandy, Brandon, Carson and I getting soaked!!

Cooper playing at Sea World

Carson

Dad, Madison (Jolene's youngest), Mandy, Brandon, Matt and Keegan on the little coaster - Sea World.

Shamu - Sea World

Shamu

Jolene and Riley

Coop and Papa

Carson and I

Alyssa (Jolene's oldest), Taylor (Jerry's oldest), and Riley

The newest swimmer - Carson

Got Buns?


Keegan hangin' out

Rain forest Cafe'


Rain forest Cafe'

5 little monkey's at the San Antonio Zoo

This squirrel was the funniest thing I saw the entire trip. How hot is it?

******
Also, there has been a little correction with Carson. Carson will not be having the ICP probe study done on the 17th. The NS wanted her to see the opthamologist prior to the study. So, we will see the eye doc here in Appleton on the 19th, and her ICP surgery will be on the 24th. She will spend her 48 hours in the PICU. I will post more about it as it gets closer.

Thanks.

ICP probe

Just found out that Carson's ICP probe surgery will be done on June 17th.
I believe they will monitor her for 48 hours.

I also believe that after the results of this, they will schedule her for the cranial vault revision (skull reconstruction revision). Her skull is no longer growing fast enough for her brain and so this revision is needed.

I will keep you all posted.

Pictures

OK, so I am a bit behind in posting pictures.... our desk top computer croaked on us so now I am learning how to work this stupid laptop. God help me!

Anyways, better late then never, right?

I think Riley likes what Dr. Frim is telling her~

Riley and her famous artwork (red one above her). Art gallery in Comer children's hospital.

4 yahoos in Frim's office

What?? This isn't Frim's OB clinic?

Keegan and Dr. Ferguson - Finger, nose, finger, nose.....

Twin super heros at the RMDH

Strawberry shortcake was there too!


Molly and I

Jack and Carson grocery shopping together at the RMDH.

September 20th, 2008

Will be the first Conquer Chiari walk across America day!! I am so pumped about it.

We have got to do more to spread the word about this terrible disease.

Remember the balls I got and put in my big girl undies? Well, they are riding high right now.
Not that I don't have much going on in my life right now (cause you all damn well know I am inches from drowning), but I am hoping to have Appleton as the Wisconsin city to have the walk. CC is trying to get a walk in each 50 states, and I want to be the organizer (with help from a few friends) for the Appleton walk!!!
Hopefully I will hear something this coming week if we get it or not.

Please keep your fingers crossed. We have got to raise money to find a cure - and fast!