A lump in my throat

As we get ready for bed tonight, like normal, Keegan helps me get Riley into bed. He starts her music for her. She gets tucked in and gets 5 kisses. Next, I get Keegan into his room, I tuck him in and he gets his 5 kisses.
As I return back to Riley's room to get her clothes out for school tomorrow, she sits up in bed and says, " Mommy, you are the worlds best mama." My eyes swell up, I lean over to give her a kiss and tell her I love her. She wispers quietly, "I love you mommy".
Sleep tight my princess, sleep tight.

Brigg's and Al's walk part 2

Yea.. Finally, the rest of our pictures. Here is a semi group shot of the Children's Champs. Our 2 are in the stroller, and 2 to the right of them is Tom Crean - the Marquette men's basketball coach.
Keegan sporting his new MU hat.
Carson, Cooper and their new buddy Ashley. The Cranio trio.
Riley, keegan and papa out for a morning stroll.

Brigg's & Al's run/walk for Children's hospital of Wisconsin

Yea - We finished! Ok, so it was only 3 miles. But it was hot, partially up hill, and we were pushing strollers. That's got to count for something right?
When Cooper and Carson's were released from the NICU we were asked by a nurse to be part of the Children's Champions program. All we needed to do was to tell our story, but our story seems to keep going and going.
So, we had been asked to do a few things lately to help raise money for Children's Hospital. A few months ago, I was asked to tell our cranio stories live on the radio for a radio - a- thon. That happend on friday. Prior to that, I thought it would be fun to participate in a walk honoring all NICU and PICU patients.
So, I set up my fundraising page, collect thoughtful donations, and today we walked our 3 miles for Children's hospital. It was great. The kids had a blast!!!! It was great to see how many people showed up. I believe they said they had just under 19,000 people for this event. WOW!
The Marquette men's and women's basketball teams came to the Children's champions breakfast area and handed out bags with goodies in them. I have a pic of Carson and Cooper sporting their new MU hats. Too funny. The really went above and beyond t make these kids feel special.

The most amazing part of the whole thing was that a friend of mine who I had been chatting with on a Cranio message board (www.cappskids.org), mind you, we have neever met, never spoke on the phone, but our 3 children all had their cranio surgeries done within months of each other (Cooper and Ashley even had the same Neurosurgeon) picked us out of a crowed of 19,000 people. I guess when you have 2 sets of twins, 2 singles and a dbl stroller, you kind of stick out. It was amazing to finally meet my "online cranio chat friend".

I have to say this will be on our "to do" list for years to come.

Ok, so blogger is being a poop tonight - I can't get the rest of my pics up. Stay tuned.....Hopefully I will be able to add them tomorrow!

Everybody Hurts

Ok -I made it!!! I did my duty by going to the radio - a - thon and telling our story for Children's Hospital.
I made the mistake of listening to the show on my way up. I was a crying fool by the time I got there. I didn't know how I was going to make it through with a dry eye. Suprisingly, I didn't cry, but I sure had a lump in my throat. I don't know how those guys sit there and listen to all the stories from Children's. Not me, no way!!

I know how bad it hurts. I think it stings a bit more when you've been though it.
I know I still hurt - and I know I am not the only one. Hugs to all the families out there that have had to use Children's Hospital.

To Comment or Not to Comment - that is the Question

Over the last couple of days I have been recieving emails on how to "COMMENT" on my blog.
If you scroll to the bottom of each entry, you will see a COMMENT section. It will say
" 0 comments" or how ever many comments have been left. Click it, and it will bring you to a comment page. Write your comment - be sure to leave your name and the bottom, then if you don't have a username or password, click the ANONYMOUS button. Do the word verification and then click LOGIN AND PUBLISH.

That's all there is to it!

Good luck!

A big THANK YOU!

A big THANK YOU for all of you who were there by our sides during this trying time in our lives.
With out you, Matt and I would never had gotten through all of this.
Thank you for being our strength!
We love you!

Our lives

Our lives at a quick snapshot~

THE RONALD McDONALD HOUSE
Our home away from home



CARSON: Crainosynostosis; Sagittal Synostosis; Cranial vault repair (CVR) - 6 hours and 15 min. Total hospital stay- 4 days. Age: 4 days shy of 9 months. Date: August 11, 2006

BEFORE
DURING
AFTER


COOPER: Craniosynostosis; Sagittal Synostosis; Metopic Synostosis - did not repair metopic area due the fact that his skull was way to thin - would have caused damage to the dura.
Cranial Vault Repair (CVR) - 6 hours. Total hospital stay - 4 days. Age: 10 days shy of 10 months. Date: September 6th, 2006

BEFORE DURING AFTER
These kids are my heroes. This past year has been a struggle for both of them and for our family. Hopefully, these kids will recover quicky and live happy healthy lives.

Thanks to all of our friends and family for all of their warm thoughts and prayers.

Back on track

Hey everyone:
I know I haven't been very good at keeping up with my blog, but when life throws you some curve balls, you have to deal with it. My curve balls have been pretty tough these last few months, but I'd think my family has handled it farily well.

I had been posting all of medical stuff on Carson and Coopers website
http://www.caringbridge.org/visit/coopercole
www.caringbridge.org/visit/carsoncole
but now it think it is time to get my life of blogging back on track.
Please come back in the next few days to to see my progress.

Carson update

Hi all. This is Molly posting an update and some photos on behalf of Cindy.

Carson is doing okay. I guess I use that term a bit loosely to say she is doing as to be expected coming out of a surgery like this. She is still in pain but taking meds to help with it, and definitely tired of being poked and prodded in the hospital. Through the weekend she slept a good amount (though she is woken fairly often by nurses for this or that) and when she is awake she is pretty groggy. We've gotten a few smiles out of her, and I am sure she will really have something to smile about once she gets home.

Originally it was planned for Carson to go home tomorrow (Monday) but unfortunately she still is refusing to drink a bottle, so she will not be allowed to leave until she is regularly eating on her own again.

Nana, Papa, Uncle Mike and the kids all came down to the hospital today for a visit, which seemed to relax her a bit. Cooper put on a show for everyone, saying Mama and rolling over! He was the life of the party. Carson didn't seem to mind. :0)

Please keep her in your prayers, that she continues to heal and starts eating again. You can also check for updates from Cindy and Matt here.

More pics.....

Kids

Hi all...
I know it's been ages since I have written, but the doctor stuff has been consuming me. I promised myself I wouldn't talk about medical stuff here so it's been pretty blah.

Here are a few pics of the kids.

Enjoy~

The oldest of six....

The reason we are all family. Agnes Carney. My gram. Nana2 to the kids. She just had her 87th birthday and is doing well. We travled 1000 miles to be with her and the rest of the family for a family reunion in the Poconos. It was a BLAST. A bit chilly....but fun! My gram was the only one of her 5 other sibblings to make the party. Some have passed on and some are ill, but nevertheless, they were all with us that weekend.
We fished, we swam (thank goodness of indoor pools) we caught bugs, we sat and chatted around the campfire. It was perfect. Can't wait to do it again! Enjoy the pictures.

PIG ROAST

This past weekend we went to our friends for a PIG ROAST. The kids had a blast. I wasn't sure how the kids would react to seeing a "Pig on the grill", but they did great. Riley liked it so much she kept wanting them to open the top so she could see.
They have a pond in their backyard that can be fished in. Keegan liked it so much he sat on the hill to watch. At night, Papa and the kids got their fishing poles out to see what they could catch. Keegan has a Spiderman pole and Riley has a Barbie pole. I think the kids did better than most of the men. Keegan caught a "sunny" one (sunfish) and a couple of small bass, and Riley caught a couple of fish and she even caught a turtle! It was fun. Here are a couple of picture from the weekend! Enjoy.

Who could ask for more

We had a beautiful Memorial Day weekend. I don't know about you, but it was sunny, high 90's, and no rain. I think it was one of the best Memorial Days we had in a long time. Here in Wisconsin you just never know if it is going to be blazzing hot...like this weekend, or if we are going to have a blizzard!
Friday we got to spend some time with Auntie Kerri, Joy, and Bella - the dog. Here are the 3 amigos having "tummy time".
After Matt got home from work on Friday we headed up to the lake, our home away from home. We met up with Riley and Keegan - they were lucky enough to go up with Nana and Papa earlier in the week.




Carson had a great weekend! She learned how to roll over from her tummy to her back!

Well, that was our weekend. A lot of sand, water, and sun!! Hopefully there will be many more great weekends to come!

Hope you all had a great weekend!

FYI

Just a little FYI....
I will no longer be posting the kids updates on my blog. I have decided that I need a place for me to vent and rejoice, not keep an update on the kids.
If you are interested in keeping up with them, they each now have their own websites.

Carson's is: http://www.caringbridge.org/visit/carsoncole

and Coops : http://www.caringbridge.org/visit/coopercole

Thanks for understanding.

FINALLY!!!!!

Carson's surgery has finally been made.
AUGUST 11 - Matt's Birthday!
Pre -op on Aug 10th.
Just waiting for Cooper's date now.

Pictures

Thought I would share some pictures~
We love tummy time!!! Did you fabreeze this carpet????
Holy Cow Carson! "Girls, If your not carefull, they will walk all over you!" Our cute house.

Every penny makes a difference

Hi Everyone:
As many of you know, our second set of twins have been in and out of the hospital ever since they were born. Born at 31 3/7 weeks, both kids were rushed to the NICU where they spent a great deal of time. Ever since then, Cooper has been in for a left hernia repair and both kids now have Craniosynostosis. They will each take there turn at Children's hospital of Wisconsin here in the next few months as they both have their Craniosynostosis fixed. I know many of you believe in donating money to different organizations around the world, but for me and my family, we are trying to help Children's hospital of Wisconsin. If it were not for them, my kids most likely would not have made it after birth. The NICU is a great place and for you that have not experienced it, count your blessing. For you that have been there, you know what miracles they can perform..no less, saving your children! My family is doing a fundraiser for the NICU. The Brigg's and Al's run /walk is a fundraiser for The NICU, PICU, and a few other departments within Children's. If anyone would be interested in helping, please see our fundraising page, www.firstgiving.com/colekids.

Since I am here, I am also going to post a link for the Neurosurgery Dept. Dr. Bruce Kaufman, who is Neurosurgeon with Children's, partners with our Neurologist - Dr. Muszynski, is teaming up with a pilot from Midwest Airlines and they are also doing a fundraiser. Please take a moment to check it out. http://www.firstgiving.com/romp

Please, If you feel you can spare a few dollars, even five dollars, that would be great.
Please pass this blog onto anyone else whom you might think would be interested in donating.

Thanks much.

Mom and her litter

Just a quick pic of kids and I.
Left to right -
Cooper, Carson, Riley, and Keegan

CAPP Kids

Not sure if I have posted this before, but if anyone is interested on learning more about Craniosynostosis from real families dealing with it, go to www.cappkids.org
It will take you to a Cranio info page or the support board.
Thanks