Tuesday, May 30, 2006

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!

Thursday, May 25, 2006

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.

Monday, May 22, 2006

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.

Saturday, May 20, 2006

Mom and her litter

Just a quick pic of kids and I.
Left to right -

Cooper, Carson, Riley, and Keegan

Friday, May 19, 2006

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

Still in our holding pattern

Ok....Yes, it's really me again. I see that it has been 2 whole weeks since I have blogged, but I feel like all I have been writing lately has been depressing, well, except for the last one....that was pretty cute.
So, here I am again. 2 weeks pass and I still only have depressing things to write about. Oh well, here it goes anyways.
On May 18th, Carson and Cooper saw Dr. Jensen, their Caniofacial surgeon. He will be the second pair of hands in this journey they will be taking here shortly.
*I must admit, I will be writing very specific details so if you chose not to be OVERLY informed, you may want to stop reading now. Thank you much for stopping by!
For the rest of you, our appointment went like this:
We started with Cooper, and for the first time I got to see what his CT scan looked liked. It was actually pretty cool. The doctor had the scan rotating so I could see everything - even the fussion. Looks exactly how you think a skull would look. Then I got to see Carson's CT pictures. Totally opposite of Cooper's. My first thought was "Holy shit," why are there holes in her skull? Her scan looked like a mouse had eatten holes in her skull. Dr. Jensen then quickly chimed in to let me know that indeed they were not holes, but areas of very thin bone. Can I just say for the very first time since this whole thing came about, I was scared. Why were there holes? Ok, thin spots????? How come Carson had this and Cooper did not???
Carson also has a pretty nice size ridge at the top of her head and I was told that her head is trying to grow grow grow grow and it is growing any which way it can and some parts are growing faster than others. Alrighty then.
He then begins to tell me that both kids were born with their sutures fused. But because the bone is so thin when they are just born, it is hard for the CT scan to detect if the suture is really open or closed so it appears open. That's something we didn't know. Also, he told me that by the look of Carson's CT scan she is having some pressure behind her eyes. So, he is refering us to the Ped Ophthamologist so they can detect how much pressure there really is.
We then started talking about the procedure and what exactly is going to happen and what roles both he, the Craniofacial surgeon, and Dr. Muszynski, the neurosurgeon will have. The surgery process will begin on a Thursday, Friday morning will be surgery, they will spend the first day/night in the ICU, then Saturday - Sunday they will move to the regular hospital floor, and Monday they will get to come home. The surgery will take 6 hours. He, Dr. Jensen, will make the inital "cosmetic" incesion ear to ear, he will pull back the scalp and mark on the skull where he needs to cut and which bones need to be removed. Then Dr. Muszynski will make the first of many cuts to make sure the brain is out of the way for the removal of the bones. If I remember correctly, 2 bones, one on each side of the fused area will be removed by Dr. Jensen. Then, after all the bone are cut and removed, he will put everything back together by using plastic plates and screws. Which is the reason there will be no need for a helmet/band after surgery. Everything will be in place and in the right position. We were also told, again, that there is a good possiblity they may need a blood transfusion. I have the info for those of you that have asked about donating for them I will let you know what needs to be done. As for having a date yet? Nope, not yet.
They would prefer ther kids to be 6 months old(adjusted age) before he does the surgery.The bones in their heads need to be a bit stronger so it can handle having screws placed.
So, with out knowing anything from the Ophthamologist, surgery will be done at the end of July, early August. Depending on the results of the eye exams, Carson's may be moved up. And, they won't do both kids together, they will be done about 1 month apart. So, here we sit in the holding pattern again. That's the update we have for now.Thanks....to everyone!

Saturday, May 06, 2006

Kids say the funniest things

My mom has been trying to teach the kids new songs lately. It's been pretty funny. They learned everthing from "Lolly pop" to "Boy from New York City" to "Twinkle, twinkle, little star", But I think they funniest I have hear is "Row row row your boat". You know they hear words, but are they always the correct words?
Here are Riley and Keegan's version of "Row, row, row, your boat".

Riley:
Row, row, row, your boat, gentley down a stream, lifes a drama queen.

Keegan:
Row, row, row, your boat, gentley down the street, mary, mary, mary down the dream.

Then we are all in the car the other day and she is trying to explain to them how to do a round. Let's just say I have never laughed so hard!

Carson and Cooper took a big step the other day and got to try
rice cereal for the first time.
I think the pictures tell all. Don't you?