Last day of school - Feb 7th

I can't believe that 1 week from now will be Riley's last day of school. It breaks my heart to be taking her away from her normal routine, but mainly, her friends.

The preschool had a management meeting earlier this week and they will be listing her as "Enrolled, but not attending". Their main goal will be to get her back to be with her friends.

The program will go on as such; as soon as Riley is back home, and feeling up to it, her teacher will bring her "homework" to her, and Matt or I will sit in as her teacher. After 3 - 4 weeks, and with a doctors note, they will allow her to come back 2 out of the 4 days, and I must stay with her. No bus ride. As she progresses, they will bump up her time at school, but for the rest of the duration, I will need to be with her. Atleast they have allowed her back in, and are willing to get her back to some sort of routine.

We are still dealing with the tears. We went yesterday to get a "new toy", but she instantly asked if it was for the hospital. Even if I say no, she doesn't believe me.

I hate that she will be in over Valentine's Day. I love Valentine's day, and let me tell you, there is nothing romantic about the PICU (ped. intensive care unit)!
I bought her some sock money satin Valentine's day Pj's at Target yesterday. I am hoping she'll be all about the "girlie" stuff when she is feeling better!

My dearset friend Kaci mentioned to me that, "with each passing surgery, I found myself wearing down sooner than the last" (she has been through more surgeries between cranio and chiari with her 2 kiddos than I can count on both hands), which I am finding to be so true. With Carson's CVR, the adrenaline was pumping so fast, and so hard about a month prior to surgery. I could have gone a month without sleeping, and I would have been fine. With Cooper's CVR, I was running on high, but knew what to expect. This surgery, I am searching for my adrenaline , and am already beat, and we still have a 1 1/2 weeks to go. I'M IN TROUBLE!

Thanks to all my friends who are keeping "tabs" on us. It's truely kept me going!

Please don't mention the "H" word

I will admit, it's been very stressful around here. The "H" word is not at the top of anyone of list of favorites these days, especially Riley's. She has been stressed out to no end and I am not sure how to help her.
To be honest, I am not sure if I am helping or making it worse. In case you are wondering, the "H" word is hospital. I am trying to prep her the best I can, not even for surgery, but just the whole trip, and I feel it is all blowing up in my face, and it's killing me.

2 days ago, our friends from our birth to 3 program decided that Riley was in need of a friend. One of our favorite teachers stopped by with a Spinoza bear. They give these bears to children who are/or will be going through a traumatic experience in their life.

Let me back up, if you have never heard of a Spinoza bear, join the club. I had no idea what it was, or what it's function was. This bear is special. It comes with a built in tape player.

"Spinoza and his Woodland Friends™ have a library of nine original cassette tapes. Through fun stories and songs they instill self worth, give positive reinforcement, are motivating, help open communication, can be relaxing and comforting or energizing and invigorating".

Here is a link to the Spinoza bear project. http://www.spinozabear.com/

Yesterday, before Riley went to school, I pulled out her Spinoza bear. I had the introduction tape already inside, (the music on the website) and we sat by the couch and I gave it to her. The music started playing and within less then a half a second, she was in tears! I don't just mean tears, I mean gumdrop size tears. She screamed at me to turn it off, and pushed it away. I couldn't help but instantly start crying with her. I thought she would like it. I thought it would comfort her, but all she see is HOSPITAL!

This trip into surgery is going to SO much different that going in with Carson and Cooper. As soon as the "H" word comes up, and she starts crying, I can't help but to shed a few tears myself - privately. I don't know what to do. I don't believe that being all "hush, hush" about it is going to help either. Am I going about this the wrong way?

Today, I pulled out the bear again, and instant tears came down her face. I pulled her into my bedroom and we started to dress the bear up. I thought maybe if she decorated it the way she wanted to, maybe the bear would become more comforting to her. The bear now has pink bows around it's ears, and is wearing a pink shirt that says, " what happens at Grandmas, Stays at Grandmas." We'll see how this works.
She still won't listen to the music without shedding tears.

Only because people are tired of hearing, " Nope, I think we are ok".

Let me just start out by saying, " Thank you" to all of you who have offered to help our family over the last 2 years!

It has been a bumpy ride for the most part. Starting with, Carson and Cooper being born 9 weeks early and their 26 / 39 day NICU stay. Then, it went onto Cooper's hernia surgery, then Carson's 7 hour cranial vault repair (CVR), then Cooper's 7 hour CVR, and now....... 2 weeks from this Tuesday, we will be headed into our biggest surgery yet.

When Riley was 2 years old, she was seen at CHW for low muscle tone on the right side of her body. The Orthopedic specialist that we saw scheduled an MRI to make sure Riley didn't have a brain bleed at birth. The MRI showed no sign of a brain bleed, but they did find Chiari Malformation.

On a Friday, at 4:45pm, I will NEVER forget the voice mail the doctor left on our answering machine. "Hello Mr. and Mrs. Cole. This is Dr. so and so. I am calling to let you know the results of Riley's MRI. We found no sign of a brain bleed, but the radiologist believes she has Chiari Malformation. Please call back at your earliest convenience.".What in the heck is Chiari Malformation???? I rushed to the computer and searched Chiari Malformation. As soon as I saw the words "BRAIN DEFECT", I lost it.

We knew after she started having symptoms, about 6 months ago, that surgery may be in the near future. I was thinking more like 3 - 4 years from now. Not 2 1/2 weeks from now!

Riley will undergo a chiari decompression surgery. We are praying that this will be the only surgery she will need. But, because there is no cure, there will always be the possibility of needing another when she is older.

So on Tuesday, Feb 12th, Matt, Riley, and I, will head down to Comer's Children's hospital and their RMDH for a 10 day stay.

Matt will most likely make a few trips btwn Riley and I, and my parents, who will try to keep a normal schedule going for the other 3 kids.

Once again, Matt and I are very overwhelmed with all the offers of support we've been receiving. Everyone's been offering to help with whatever we need - we just aren't sure what that is yet. We're trying to put together a little list of ways you can help.

Please know we are only making this information available because so many people have asked!

First, and foremost - Riley LOVES Mail!

Here is the address to the hospital:

The University of Chicago

Comer Children's Hospital

5721 S. Maryland Avenue

Chicago, IL 60637

I know Riley would love to receive mail. I do believe we will be in the hospital from Wed. Feb 13th - Sunday, Feb 17th. Then from Feb 18th - 21st, we will be at the RMDH, and I know they accept mail there as well.

*Ronald McDonald House

5444 S. Drexel Ave.

Chicago, IL 60615

We could also use gift cards:

* Gas cards = Kwik Trip, Mobil, Express, BP, etc...... Matt will definitely be putting on the miles.

* Grocery Store Gift Cards = Festival, Copps......This will also help my parents with the other 3.

* Target = this may be a big one. I will have to find stuff to keep Riley occupied during this time and at home.

* Any restaurant gift cards = Something quick and easy for all of us.

The other kicker is, Riley's preschool MAY NOT allow her back for the duration of the school year because she will have missed too many weeks. They will be having a "management" meeting this coming week to discuss her situation.

We've also set up a "donate" link on the right side of our blog that will take donations using PayPal. We'll use any funds donated there for the above expenses - mainly to keep Riley entertained and happy.

Thanks again to everyone for their overwhelming support!

Happy 2 year blogiversary

Happy 2 year blogiversary to me!!

I can't believe I have been posting here for 2 years already!

Because this is a special day, I'm sharing some never to be seen AGAIN pictures with you!

Good thing I like you!

Last night, The Appleton West high school pool was officially dedicated to my Dad! Over 150 of his current, and alumni swimmers, and friends, showed up to wish him well.
After the dedication, somebody thought it would be funny to watch the OLD and more recent alumni swim. I told myself I wasn't going to do it. My age group swimming pals were all in town , and I was determined to watch the others make fools of themselves with them. That was UNTIL......1 one of the girls relays was short, and needed another body. They twisted my arm and here are some never to be seen again pics of me!

* Note: I have not swam competitively since college.....oh 13 yrs ago!

My brother and I "suckin" for air.

Keegan giving me a bit of a pep talk

I finished, I finished, I finished!!! It was fun. Thanks for talking me into it Barb!!!

Congratulations Dad! You totally deserve it!

I swam for my dad for 4 years, and my brother 3, but were pretty much raised on that pool deck!

Thanks for all the great memories!

We love you!

To read the article that was in the paper today, go to http://www.postcrescent.com/apps/pbcs.dll/article?AID=2008801260631

Ronald McDonald

Last week Thursday, when we stayed at the RMDH, the first thing Keegan wanted to know was if they had burgers and fries there. It was pretty funny! It was hard for them to understand why it was called the RMDH if they didn't have any food.

So, once we got all settled in, they took a quick tour of the house.

The kids with the "BIG" guy himself !

This is where we did our 3 loads of linens that they have you do before you leave. Each floor had their own laundry room. Stocked with everything you would ever need and more. You forgot your toothbrush? No problem they had one for you here. You forgot soap? No problem. deodorant? hairspray? shampoo? NO PROBLEM!

This GIGANTIC kitchen was to die for! I want this in my next house. A station for each kid!!!
this kitchen had 4 stations. Each station is equipped with a dishwasher, a sink, a microwave, range, cupboards filled with all sorts of fun stuff, and they had 2 HUGS refrigerators. It was sooooo nice!

The dining room.

When you walked into the front doors, past the secretary's desk, there was this beautiful "roundabout"( as I called it!). It sprouts off to 3 different hallways. I loved it!

This house has only been open since December. It's as clean as a whistle, and they only charge a donation of $5.00. I didn't get any pictures of the rooms, but they were huge! Our room and 2 queen beds, and a pullout sofa. Our own bathroom, and WIFI!! Who could ask for anything more!!

Thanks Ronald McDonald for letting us stay!

Here is a Chiari video that I found at the Chiari Institute. I found it to be very informative.

Go to http://www.northshorelij.com/body.cfm?id=6456 Then click on the Chiari Malformation anatomy video.

Happy Birthday to you!!!

5 years ago today, Matt and I started our journey as parents of twins!


HAPPY 5TH BIRTHDAY RILEY AND KEEGAN!!!!!!

January 21, 2003

Riley: born at 7:14pm weighing 5lbs 9 oz 19 in. long

Keegan: born at 7:16p weighing 5 lbs 11 oz and 19 in long

Matt dressing Keegan for the first time. Riley watching to make sure he does it correctly.

Happy 1st birthday!

Happy 5th Birthday!

Livin' in the windy city

Today we had Riley's chiari appointment in Chicago. It was a loooong appointment. 4 hours long....... but the doctor was well worth the wait(he had a great rubber ducky bow tie on!). It was finally nice to hear someone talk about chiari and actually know what they're talking about. I do believe this doctor eat, sleeps, and breaths chiari malformation. So, needless to say, I totally trust him. I trust him so much that I will allow him to do surgery on my child. That's right, Riley is going to be having her decompression surgery on Feb 13th. Riley was an instant candidate due to her aspirating.

The surgery will consist of removing pieces of bone at the base of the skull to make it wider, they will remove pieces of the c1 and c2 vertebrae, and they will open the dura and cauterize the cerebellum tonsils. All of this should be done in 3 1/2 - 4 hours.

So, we will come back to the RMD house on Feb 12, spend 10 days here, and then hope this will be the only surgery she will need.

Lets keep our fingers crossed.

It's been a busy day. My head hurts. I am off to bed.

Good night

Strike 2 and 3?

Ok, So I am not doing well with the blogger 365. I am trying very hard to keep up, but some days I just don't feel like blogging.

Anyways... tomorrow Matt, Keegan, Riley, and I are off to Chicago for Riley's chiari appointment. I am not sure what to expect, and the unknown is scaring me to death. I just hope my gut leads me in the best direction for her. I think I am going to sneak my friend Kaci in my pocket to help guide me.

Because we will have Keegan with us, we have decided that the boys will go out and do their thing during the appointment. We have been told it could take anywhere from 3 - 4 hours from the time we get there, to the time we see the doctor in the exam room. The museum of Science and industry is free for a week or so, so I am sending the boys there for a little male bonding time.

We also found out yesterday that we got into the Ronald McDonald house, so we will stay there at night. Friday, the Shedd Aquarium is also free, so we will go there for fun family time.

Then on Saturday, the Ray family will be up for Riley and Keegan's birthday party. I can not wait to see her kids. We haven't seen each other since September!!!

And who could question what we will be doing on Sunday?!?!

That's right baby..... Watching the Packers beat the pants off the NY Giants! (Sorry George!)

A short road to the Superbowl!

Thanks to the NY Giants, the Cowboys are history!!!
This means the Packers will play the Giants at Lambeau!!!
It couldn't get any sweeter than that!!!

AND......my babies are home!!! Thanks nana and papa for bringing them home safely!

It's been a GREAT day!

Packers 42, Seahawks 20

WOOHOO!!!

Go Giants! Beat those Cowboys!!!

Tomorrow my babies will be home! I can't wait!!!

Oh what to do...

Before my little 2 come home on Sunday.

CLEAN, CLEAN, CLEAN. I have been putting it off all week until the last final minute. Who wants to do it more than you have too, right?

I must admit, I have missed my little bundles of joy. I've missed all the new phrases that Cooper has learned like, " I yave noonles" (I love noodles), and "Come on Papa"......
And Carson, "Nana, I sure hope she's potty trained". Every time I talk to my mom I hear in the background, "Nana, poddy!"

I can't really say I've been on a vacation without them, but it sure has been a bit easier to run around without them.
But Sunday will come - (after the Packers beat the britches off the Seahawks tomorrow), and I will run just as fast as Riley and Keegan down the hallway when my babies appear. Then, life as I know it will resume.

Good luck Nana and Papa, travel safe!

Blogger 364??

AHHHH I missed a day, ALREADY! On January 1st, I signed up for Blogger 365 (because it's a leap year) and I have already skipped a beat! Do you think it will help if I blog twice today? Should I post mark this one, JANUARY 9Th? Oh well, I guess there is nothing I can do about it now, but blog.

Yesterday, as I was cruzin' the internet, I came across "freewebs". Free web pages. How cool. What a perfect place for Riley to shout out to the world. I asked Riley if she wanted me to start a page of her own, and let me tell you, my ears are still ringing from her excitement!

So, If you are interested, please go visit Riley's new web page at:

http://www.freewebs.com/rileyschiaribracelets/index.htm

Please feel free to sigh the guest book as well.

We will be adding more fun stuff to the page as we find time.

A little ME time

Today, I decided to spend a little extra time on ME for once.

For Christmas, I had received an hour massage. YAHOO!!! Someone (Matt, Mike and Mandy) knew I need a little ME time.
With the little 2 gone with nana and papa, I decided to take full advantage of it.
It was fun, and relaxing while it lasted, but folks.....not 12 hours later, and I feel like a mac truck ran me over again!
Did the massage even happen?
Will I ever escape this semi stressful life I lead?
I am starting to think not.
So, I will get my fingers all stretched out and ready to bead.
I am starting to believe it is my calling.

Good night!

Triplets

Here is a short conversation I had with Riley today.

Riley: Mom, with 1 baby, moms have to push.

Me: Oh really? What happens with 2 babies?

R: With 2 babies, they have to cut them out. They cut out Carson and Cooper, and me and Keegan.

Me: Yes, yes they did. It's called a c - section.

R: I am going to have 3 babies. Guess I'm going to get cut.

Who says kids don't remember stuff?

Quest to cure chiari

My little entrepreneur.

She is doing a great job with her bracelets. I believe we are up to $75.00!!

Thanks to everyone who had bought, and who has orders in!

We know our few dollars won't cure chiari malformation, but we sure hope it will help!

My favorite time of the day

Nap time!

Who doesn't love to see sweet children snoozing away in your own bed?

LOVE IT!

Converstation

Here is my last phone conversation with Carson today.

Me: Hi Carson. Are you having a good time?

Cars : Hi Mommy

Cars: lyliekeeganlyliecoopapapa (in translation - Riley, Keegan , Riley, Cooper, Papa. )

Me: Ok baby. I love you

Cars: I yayou mommy.

Just fine

At 8:45 am, Matt and I dropped off my parents, Carson, and Cooper, at the airport. I must admit, that part of me didn't want to see them off, but the other part wanted to make sure they got off all right. By no surprise, they did just fine. They got to my grandma's just fine, and everything is just fine. Hopefully, everything will stay JUST FINE.

Riley had her second eval with the speech therapist this afternoon. She did just fine. They did come to a conclusion that Riley has a very TINY gag reflux. So small that it's barley there. This is not uncommon with Chiari, from what I've read.

So from here, we will sit tight until January 17th, when we go to Chicago to see this man. There are no more doctor's appointments between now and then, and hopefully it will stay that way.

Good Night!

Their leaving on a jet plane......

....tomorrow, and I am very sad about it. My parents are taking Carson and Cooper to my grandmas in NJ for 10 days. 10 DAYS!!! Did I mention they just turned 2???

Today, Carson, and I, had a very long day in Milwaukee. We went down to see the orthopedic specialist about her legs. Which, by the way, went very well. We also ended up at the doctors tonight because she has such a bad sinus infection its coming out her right eye, which has the stint, which is infected as well.
Do you see why I am nervous and sad that they are leaving? I know Carson doesn't feel well, so it might be a long flight for that sweet girl.

On top of my sadness, there is some good news. Riley got in to see the chiari specialist at University of Chicago. She goes Jan 17Th.
I am so excited. If I can wipe away the tears, you can see my smile!
I also believe they are hooking us up with the Ronald McDonald house! Bonus! Thanks Sheri for getting us in!

So f0r 10 days, I will be 2 kids less. I think I will take advantage of the 1 hour massage I got for Christmas.

Good luck Nana and Papa! Be safe. Take care of my sweet babies.
Love you.