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

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!

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?

Pulled ALL of my hair out

Guess this is what happends when you are soooo stressed out.

The 28th came and went

The 28th finally came. We went to see the neurosurgeon and now it is gone. We now wait for our next date to come - May 8th. Not much new was told to us today. They did confirm that surgery will be needed for both kids and that by surprise, Cooper's is actually worse than Carson. Cooper's brain is actually starting to get a bit squeezed and so there is fluid in places there shouldn't be and not enough in places there should be. Both kids will be having MRI's on May 8th because of that. Then, on May 18th we will be visiting with Dr. Jensen, the other half of the surgical team - Craniofacial (plastic surgery). So, no surgery date is set yet, it will depend on what the MRI's show.
Until next time.....

56 hours and counting

Until the much anticipated trip to Milwaukee to see the neurosurgeon. It seems like it has been months since we made this appointment! I can't even begin to tell you how anxious I am. I have been so stress out about the whole ordeal that I have blow my diet totally out of the water - gaining 6 of the 15 lbs back. It is true.....I am an emotional eatter. But, who can blame me. (For you that don't blame the stress....keep your comments to yourself.) If anyone is truely interested in our situation, I invite you to cruz' through this message board - cappkids.org - It stands for Craniosynostosis And Positional Plagiocephaly Support. I have learned a lot from this message board. There seems to be a few people from our area who are going through the same thing and are seeing the same doctors. I know not everyones situations are the same but it's nice to aleast have some sort of a clue.
I am attaching 2 pics I just took of Cooper and Carson's heads. They both have partial sagittal fusions going on, but 2 totally different shapes.

Carson's is "bossing" in the back and starting to "boss" in the front. Her soft spot is also starting to get pushed up. Looks like a lump on the top of her head. Coopers is long and narrow in the back and wide at the front. No "bossing" going on. Go figure. Like I said before.....Friday can't
here soon enough. I need to know what's truely gone on.

Until Friday......have a great Wed and Thursday!

Oh Crap, I've been tagged.

Thanks Molly for tagging me! Not much I can do about it now, so if I must.......

5 things that are strange about me. HUM....

1. I had a blue little baby blanket that had the satin edging on it and I just finally gave it up and gave it to Keegan when he was born! Matt was very glad to see it go!

2. I love blankets with the satin eadging on it. When I am using it, I have to have a corner and I stick 1 finger inside of it. Weird? I know.

3. I can't stand it when kids bite on their towels.......it makes my skin crawl!

4. I can't stand zipping up zippers. The vibration it makes drives me crazy!!!

and finally.....
5. I can not stand to sleep with socks on!


Ok Becky....I am tagging you. Let's hear all about it!

Say Cheese!

Hope everyone had a great Easter! We had a great, but long and semi stressful Easter weekend. Saturday, we had a great family outing at our local class A minor leage baseball team. The Wisconsin Timber Rattlers are the farm team for the Seattle Mariners. The games are a lot of fun and very family oriented. Last year Matt had won a suite that we could use for the 2006 season and we had decided to use it. The kids love it. We even got a photo opportunity with "Fang". Carson was also very intregued.
Then, after the "base game", as Riley and Keegan call it, we had a pizza party back at our house. Our friends from Indiana were there and Matt's family from Chicago were also there. It was nice catching up with everyone.
Sunday morning, Carson and Cooper were baptised at Easter mass. Let me tell you, we had a ton of people. Cooper had his God parents, Kerri Olsen and Tom Robinson, Carson had her God Parents - Kevin and Molly Ray, plus Erin and Brian Benes were honorary for both kids. Plus our family and close friends and everybodys kids. We had a crew!
After mass we all come back to our house for a Easter / baptism feast. Let me tell you, there was no point counting that weekend.
It was wild, and fun! We had a great time.
Now it's back to reality. There is laundry to be done, a house to be cleaned and lets not forget the stress and anticipation that is brewing around here awiting the kids NS appointment on the 28th.
I need to be bluntly honest with you. It is all starting to take it's toll on me. I have been having weird vision issues, headaches, and pain in the base of my head/neck area. I am trying so hard not to let it get to me or bug me but how is that possible? I am streched to the max. Maybe now that the baptism is done, I won't have to worry about so much at once. Hopefully I will be able to find time to myself and relax! Yah Right, maybe in my next life.

Tish....This is the purse Linda sent me. Isn't it great?

Until next time America.

Are you STILL there God?!?!?

...Ok, I have had about enough of all of this CRAP that you are putting us through! I know it is Easter and it's a big day for you, but geez louis....Give US a break man! All I can do is sit and wonder if I caused this all be having them early?!?!?! I can't imagine what else it would be.
Do I not go to church enough? Is it because I yell at my kids on the days I have totally lost it?
What???? What did I do to deserve all of this? Please tell me!!!!

Now we sit and think....if they need to have surgery, do we do them together? One at a time? Hire a nanny? Is it covered by our insurance????? Move to Milwaukee???

Please answer me!!!!!!!!!!

Are you there God....

..no, it's not Margaret, it's Cindy. Listen up pal, we need to chat, not about my period, about Cooper, but not until tomorrow though. I need to see what you are going to do for Cooper first. He has his CT scan tomorrow morning at 7:15 am....you better be there! And, if you give this family one more thing to stress over, I'm going to $#%^*$%^&$*%#$, OK? Do not tell us that Cooper's head is also starting to fuse.
This chat is to be continued.........

Consumed by desire

This.Is.My.Life. - In a nutshell. Oldest to youngest. I know I ALWAYS write about these 4 little people, but This.Is.My.Life.
What did I do? Who was I? Before these 4 little people came about?
I could write about the cat that Matt and I used to have . Parker. He was an orange and white tabby. Fat Cat. If he was hungry and you didn't feed him exactly when he wanted to eat, he would play dare devil kitty and chew through our electrical cords. So my options were: feed the damn cat, or lose all our expensive electronics and have a fried kitty. Bless his little heart....He is now looking down upon us from up above.

I could write about the dog we used to have. Silly me. NEVER get a lab puppy when your twins are only 10 months old. What in the hell was I thinking. Anyways..... Bentley. Our attention seeking puppy. Everyone commented on how calm this dog was for being a puppy. Which, he was. Until you placed him in a crate. Not a good thing usless you want your house full of dog spit....from barking so much! He ate our couch, our phone, the kids toys.......you name it he did it. Until one day, Bentley went on a permanent vacation....as my kids know it. He found a nice couple who were not able to have children of their own and were looking for a "baby". They made a great 3 -some. I hear he is doing well and loves his new home.

So, that brings me right back to the 4 little people in the picture above. I would much rather write about them then anything else. If you get sick of hearing about them then tough because
This. Is. My. Life.

~ It's a small world ~

Ok, first..I have been asked to to blog again. If I was smart.....I wouldn't have place this picture of Cooper's hernia in the begining of the blog. Now everytime someone checks to see if I have blogged, you see Cooper's "inside's". Sorry about that. :)
Ok, on to business.
About 3 yrs ago I was reconnect with my childhood friend Becky. She grew up across the street from us. My family moved off of Ridge lane when I was in 8th grade and we sort of lost touch . We saw each other in high school, but didn't converse much. She was a year old than me and we hung out with different people. Once we were both out of school, my mom or I would occasionally run into her mom and we would learn bits and pieces of what she was up too. About 3 yrs ago, I had ran into her mom at Kohl's department store. I had just given birth to Riley and Keegan. Her mom had told me that she was pregnant with her first and was living in Conn. and that she was married and had 2 step children. It was wonderful to hear that she was doing well. About a month or so after seeing her mom, I got an email from Becky and she had found me on classmates.com. It was so good to hear from her. Some time later, after a few emails, I had let her know that the kids and I were going ot be out in New Jersey at my grandmother's and that if it would work, it would be great to get together. So, while we were in Jersey, she and her 2 step children and her new little boy Josh came to visit. It was great. We had a good time catching up. It's funny how time flies by and so much happends.....when you look back from when we were in grade school. It makes me smile. We had such a good time growing up together. I remember when we used to dance in our family room to Michael Jackson's "beat it" and we used to make up our own dances.....laughing. Oh how much fun we had.
She comes home ever so often and we met up. I just found out last time she was here that I live almost directly across the street from her cousin, who we also hung out with during Jr high.
It truely is a small world. Becky is looking into starting her own blog as she also now has a toddler and a baby. Can't wait to read Becky!!! Good Luck! Thanks for tracking me down on Classmates..it's be great catching up!

One down, two to go.

Well, It has been an eventful week here at our house. Cooper had his hernia surgery a week early. It was supposed to be done on the 7th, but the the doctor called and asked if we wouldn't mind having it a week early. So, finally, it's over. Cooper was a champ. He did terrific. The surgery lasted about 1 hour and 15 minutes. Not bad. They made an incesion under his belly button and scoped both his left and right groin areas. They only found the hernia on the left. They then made about an 1 1/2 incesion and repaired the left side. (the picture isn't the great but if you look up at the right corner of the picture you can see a line that goes down about 1/2 inch...that's the hernia that needed to be sewn shut.)Get this, they gave him an epidural. I thought that was pretty funny. I thought they were only used on pregnant women. Who knew?
Anyways....I wish I had a camera when he can rolling out of the recovery room. He was laughing and flirting with the nurses...... It was cute. I am sure he was feeling pretty good at that point.
Except.....that all changed a few hours later. His pain meds must have worn off because he was a hurting little boy. With being so small they could only give him tylenol. I felt so bad for him. Needless to say, neither of us got much sleep that night. He was examined the next morning and we were free to go home.

Today, Carson had her head messured again. Let me back up a second. Not sure If I have blogged about this, but Carson has been dealing with some "head size" issues for a couple of weeks. Her head has actually been growing to fast and in a "toaster" shape. So, our doctor has been watching her closely. Carson had a CT scan while she was in the NICU to make sure things were growing well and that the bones hadn't prematurely started to fuse. Everything looked great at that point. Except...her head has continued to grow funny and fast. She had a second CT scan about 2 weeks ago and they found that there was a small area behind her soft spot that has started to fuse together...which if it countinues to fuse it could start squeezing her little brain...NOT GOOD.
So, today....Carson had a 3rd measurement done and a 3rd CT scan. At 4.5 months old her head size is off the growth chart, which makes us a little nervous. In 2 weeks her head grew 1 1/2 cm.
So, she has an appointment with the neurosurgeon at Children's in Milwaukee on the 28th. She now needs to have x-rays done so they can see how bad the fusing is. They call this head growth / fusing thing "Craniosynostosis". WARNING....if you are like me and want to look this up...I must warn you that some of the pictures you may come across are very graphic. Just to warn you. I was no way ready for what I saw. Expecially the after surgery ones. She has also been having some issues with her left eye wondering. They said if she wasn't a preemie there would be nothing to worry about but since she was she needs to see the ped ophthalmologist.

So, it's our next hurdle that God has given us. Hopefully we will be strong enough for this.

Riley also has an appointment with the neurologist on the 24 th and then the neurosurgeon that same day with Carson for her A. Chiari Malformation. I'm sure it was be just a joyous day!
Oh yah....It was also weigh in day. I must be honest with you. This week was TERRIBLE! With the stress of Cooper's surgery and not being able to work out all week because the school was out for spring break....I crashed and burned big time. But, there must have been someone watching from above because when I stepped on the scale this morning it said I had lost 1 pound! I could not believe my eyes. So, I am now down 12 lbs!! Hopefully this week will be much better!