1.1.08 - NY time


~ May ALL your wishes come true!


13 - 3

My mom and I went to the Packer game today. It was a whopping 18 degrees at kick off.
My parents have season tickets, and today, we left the boys at home with the children.

Our tickets are on the 45 yard line, 40 rows up. Behind the Packer's bench.
# 77 Cullin Jenkins

# 94 KGB

# 50 A.J. Hawk

Our Hero ~ # 4 Brett Favre

The Boys

Deana and Britney Favre

Score: Packers - 34
Lions - 13


$475.00 left to go

for 1st goal! That's right, Riley has sold 5 bracelets already! Yeah, Riley!

A number of you have asked to see pictures. I just happened to dig in the "HOPE" bag and pulled a few out.

Thanks to all of you who have purchased one!

If any of you want one with a certain color, we will make it for you, just let us know.


stepping stone

~Purple is the Chiari Awarness color~

So, Riley had her swallow study (video x-ray of her swallowing different thicknesses) today, and it came back abnormal. Is that a good thing? Or bad? I dunno. Is it a stepping stone? Who knows.
She seemed to do alright with the thinner items, but has some complications with the thicker. The speech therapist also seems to think she maybe aspirating some food as well. Is it part of the Chiari, I dunno. The ST is going to do some research this weekend to find out if it is from the nerves being compressed or not.

Next step, bed side evaluation. It's about an hour long and I bring in foods that I think give her problems. I am hoping to get that done next week before she goes back to school.

There is one good thing that has come out of all of this. Riley has decided (on our way to Milwaukee yesterday) that she would like to make money to give back to the doctors to "fix" her. So, today we made some bracelets and placed them at a location here in town. We are hoping to raise enough money to give back to her doctor to help find a cure.

Riley is selling her bracelets for $5.00 and 100% will go to Chiari research. Our first goal is $500.00.

If anyone is interested in purchasing one, please email Riley at Ladybug_wi@yahoo.com

I will be attaching a payment button on the side of my blog.

The bracelets are beaded with either WISH or HOPE on them.

Please help find a cure for this nasty disorder.

This is why

I don't like to make Christmas cookies, candies, and such for Christmas. Not only do I stink at making them, it somehow added 13 friggin lbs to my arse!!! 13!!!! Am I supposed to throw my arms up in the air and say," oh well, it's Christmas? I'd really like not too, but I think it's my best defense right now. Holy Crap! I guess I know what my big plans are for this up and coming year......losing the EXTRA 25 pounds I need to reach my goal!!! Swell.

Yesterday, Riley, and I, made our trip down for her NS appointment. To be frank....It stunk. I know that there aren't a TON of Chiari (KEY-R-EE) specialists out there, and I know there are no experts at our CH, but I have been doing all the research I can about this birth defect, and yesterday, I think I got a slap in the face for it.
Now, I know, that the symptoms Riley is having can go both ways. It COULD BE from the Chiari, or it Could BE because she's almost 5 yrs old . Most likely, the first. Anyhow. They tired to tell me that none of Riley's symptoms have anything to do with the chiari.

(What is Chiari Malformation I?
Chiari Malformation is characterized by the downward displacement of the cerebellar tonsils through the opening of the foramen magnum and is caused by an underdeveloped posterior cranial fossa (PCF). There is no neurological abnormality of the brain or brainstem.)

Riley's BIG symptoms are;

~ loud noises: she covers her ears and cries (public toilets flushing, when Jake is near her and barks....)

~ Pressure in her ears/head when we fly: Cries going up and down.

~ Bed wetting at night: Floods he pull up and wets her bed.

~ Sometime she gags on certain foods: yogurt, mashed potatoes, cottage cheese..

~ Low muscle tone on the RT side of her body - which she has had from birth.

Here are a few from a chiari site:

General imbalance / clumsiness,
Intolerance to loud / confusing sounds,
Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes,
Decreased muscle tone,
Gag reflex problems / lack of gag reflex,
Frequent urination,
Dry skin and lips,
Pressure in ears / ears feel stopped up.

Also, he mentioned to us that there was a decrease in "flow space", but it's nothing to worry about.
"It is not uncommon for an MRI to clearly show a lack of CSF (spinal fluid) flow space posterior to the cerebellum and, yet, be reported as normal". Also from the chiari site.

So, after yesterday, I am bound and determined (more than ever) to get her into the BEST Chiari expert in our area. This doctor is at the University of Chicago - Children's. I know he is tough to get into, but hopefully it will be worth the wait. I have heard nothing but good things about him.
He requires 2 tests before he will see us - the CINE MRI, which we have, and a swallow study, which we are doing today.
Hopefully, I will be able to get both things in the mail tomorrow, and get the ball rolling.

So, until then, I will be canceling our ENT and urology appointments that the nice people made for us, and pray this doctor has an opening sooner than later.


Let the chaos begin.....

Merry Christmas everyone~

Keegan and his Christmas eve "pile".

Carson and her M & D take along doll house. Thanks Papa Cole and crew!

Cooper and his M & D take along barn! Again, thanks Papa Cole and crew!

Riley and her necklace from Mexico!


How does this dinosaur thing work???

Tyler and his i dog.

Good God - More Bratz! Can you tell what was on Riley's list this year?

Matching PJ's from Auntie Carol!

Carson and her newborn cabbage patch baby - Totally worn out!

Me and my new "toys".

Hope Santa was good to you all!

Tomorrow, Riley and I are off to see the NS at Children's. Hopefully we will find out what our plan of attack is. Then Thursday, she is having a swallow study.

We will see what happends.


Christmas eve day 2 years ago today

We brought Cooper home from the NICU.

Cooper Cole: DOB 11.15.05 / 3 lbs 13 oz / 16.5 inches long

Release weight: 5 lbs. 11 oz

39 days in the NICU

Big Boy!

Keegan, Papa, and Cooper

Big brother Keegan with Cooper

Family picture

The Cole family




I can not believe it took 6 hrs, from start to finish yesterday, for Riley's MRI. They actually did the MRI in the surgery center. They gave her some loopy juice, let her inhale some happy gas, and off to sleep she went. They then put an IV in, intabated her, and off she went.
To be honest, it was almost as bad as waiting for "team B" to come out of their skull reconstruction surgeries.


It was a very LONG day!

A bit of VERY GOOD news though, my scan results came back. Main concern, NO CHIARI!!


Nothing like trying to knock out the engine of the 'kiddie train"! I wasn't sure what I was going to do if it came back any other way. I will start physical therapy on my neck now, and get focused on finding Riley the best possibly care out there.

Also, I got a call from the most awesome cranial facial doc out there yesterday morning . Cooper has a quarter size hole on the top of his skull that we noticed is pulsating. He told me it's nothing to worry about, and that nothing/nobody can hurt it, which was my main concern. So, for now, I will cross off Cooper from my worry list!


Today, I am getting to do one of my most favorite things about Christmas. The Fox Valley Mother's of Multiples club decorated ceramic baby feet ornaments to take to the NICU for all the babies who will be there over the holidays. I also made little taggie blankets, and little gift bags filled with huggies wipes, huggies wash cloths, and lotion.
This morning, my good friend Amanda, (who I have to mention, is a relative to the famous UW basketball player - Brian Butch) and I, will take the little goodie bags to the families.

Both Amanda, and I, know what it is like to have children in the NICU over the holidays. We delivered a week apart from each other, I, my 2ND set of twins, and she delivered triplets (2 boys, 1 girl). It's tough. It's the worse feeling in the world to know you have to leave a child behind. Her daughter also has craniosynostosis.

So, together, we've done a lot, and to to do this for the NICU means more to us than anyone will ever know.

Merry Christmas tiny miracles!



Happy 1st Birthday Jake!!!


There is a GOD!!!

I do believe that there is a light at the end of the tunnel for our diaper usage.......OK, I maybe jumping the gun a hedge, but CARSON peed in the POTTY tonight!!!! OMG!! Could it be?!?! Really????? Is she ready to start potty training???? I don't know, but I am goin' run with it!!! Carson potty training 101, here we come!!!! (can ya tell I'm excited???)

Nope, no results yet. Probably tomorrow.

Ker plunk.....

Everything went well this morning, just trying to hang tight for results. I don't remember the MRI being so loud!!

Good morning sunshine......

Rise and Shine......It's MRI time!

I will post when I know some results.


Angel of lights....

We did a little "experiment" yesterday with some Christmas lights.....didn't come out great, guess I will have to read up on my "shooting Christmas lights in the dark" book. Doesn't Riley look cute though?

We finally got some well needed fun news this morning!!!!
The kids did a modeling session this past fall for a photographer in Milwaukee. These photos were going to be used for greeting cards. I wasn't sure if they would be passed on for other uses or not, but today we got word that they would be.

Allie has been in contact with a woman who is writing a book on ADHD. It is called " Art and Soul of ADHD". It's geared towards helping parents, caregivers, teachers, clinicians deal with working around the learning style of children with ADHD.

The author only chose 3 images out of Allie's many, and this was her # 1 most wanted image to use.

I can not even express how excited I am!

I can not wait to find out when the book will be available for purchase!!!


2 for 1 please

I had an appointment with my GP this morning. He recommended that I have an MRI done to either; rule Chiari in or out, and to see what the heck is going on with my neck. I can't stand the amount of pain/headache by early afternoon, and by the evening - forget it. It's been rough. I sure hope I get some answers.

With being adopted, I don't know any of my family medical background. Hopefully, more pieces of the puzzle will be falling into place.
My MRI is Thursday morning - 24 hours later, Riley will have hers. Can I use my "buy one get one" coupon? It worked for the kids! :-)


Science 101

I totally feel like I have gone back to Anatomy Physiology 100, and am now majoring in Neuro sciences.

I have been racking my brain with all the info on Chiari that I can get. Prior to symptoms, I did a bit of research...enough to know what Chiari Malformation type 1 is, and that's the extent of it.
Last Friday I took Riley in for her PRE OP - MRI physical. I guess when you have to go under general anesthesia, they make sure you are OK. I only went through that with Carson and Cooper for surgery.....Did not know it was the same for and MRI. Anyhow, things are good and she is ready to go. She was 42 in and 42 lbs. Kinda funny.

So, I have made the mistake of telling Riley that she is going in for an MRI on Friday. It just kinda of slipped when we went in for the physical. Now, I have totally scared the pants off the girl, and she's asking a bazillion question. Always, the first question is, " Do I have to get a shot?"
It breaks my heart because I know she's getting a lot more than just a shot. To keep things some what calm, I have been telling her no, in hopes that she won't freak so much.

We are trying to get Riley a CINE MRI , in hopes of killing 2 birds with one stone. We are waiting on approval from our NS.

I joined an online support group The World ACM Association Support Group ,and I have been getting a lot of my questions answered. A LOT of people that I have chatted with that have children with Chiari have almost all had surgery with in months of symptoms. AND, almost every child has had the symptoms that Riley is showing. In a way, it freaks me out that this is becoming so real, but after her diagnoses, it was all just a matter of time.
I have also found out, that children who have the decompression surgery, have a much better outcome than adults. So, part of me says, "good, let's get this bad boy fixed", and the other part says, " I am not ready for another child to go under such a massive surgery." I guess we'll have to wait and see what Friday brings.

The Good part about all of this is we won't have to travel. We got the MRI scheduled right here at one of our local hospitals. Because it is here in town, the orders went through our pediatrician. She's such a smart cookie! That means, she will get the report hopefully that same day, and we should have answers either that day, or Monday. YIPPEE! I love ya Annika! The last thing I need to do is stress about knowing the results over Christmas!

So meanwhile, I will sit, stare at my computer, eat crap, gain some weight, and be merry!

Here is a picture of Chiari,

Decompression surgery with pieces of bone (skull) removed,

and a picture of the Chiari "Zipper". Chiarian's call themselves "Zipper heads".


Puzzle Pieces

A few weeks ago I had posted that Carson is going to be seeing an orthopedic specialist at Children's because our physical therapist thought she has a leg length difference. Meanwhile, We went to our pediatrician and yes, she does. Her left leg is shorter than her right. So, we will see the orthopedic doc Jan 2nd.

When Riley was Carson age, once again, our same physical therapist found a leg length difference in Riley. Her left is shorter than her right. She wore a lift in one shoe, and an orthotic on the other.

As for me, I have been having some sever neck and shoulder pain for the last few weeks. I even went as far as wearing an electrode machine for a couple of days, and nothing happened I got no relief. So, finally our Chiropractor said, "let's take some neck, spine, and hip pictures to make sure nothing is wrong. We took the x-rays, and guess what we found??? For the first time in my life, I was diagnosed with my left leg shorter than my right, by 1 1/2 inches!!! And, it has caused some mild scoliosis - which is the cause of my pain.

Finally, some puzzle pieces are fitting together. The girls got the leg length issue from me!!!



Onto little miss Riley.......
Riley's appointment was sort of smooched in with Carson, and Cooper's, because "B" is also known for his research and work with Chiari. After talking with the team about C & C, we discussed what would need to be done for Riley. First and foremost, she needs to have a full spine MRI done. A syrinx and a tethered cord needs to be rule out.
This will be an intense MRI for Riley. So intense, that she needs to have a pre MRI physical before the scan. The scan will be done under general anesthesia and possibly done in the OR. I have been told it could take anywhere from 4 - 5 hours from start to finish. OMG!!!!
Then, both of our NS's will receive the MRI, and we will get 2 opinions right off the bat. 1 from Milwaukee, and 1 from Madison.
When we spoke with "B"'s nurse today, we talked about Riley's symptoms and how they could go either way. Is it "fluke" that she is having these symptoms? Or is it because of the Chiari.

We talked a bit about what if these are "true" symptoms - then what? Then, she could be a candidate for surgery. But all will be told once we get the results from the scan.
Riley's MRI will be done on Dec 21st and then will see the NS on Dec. 26Th - yeah, merry stinkin' "day after" Christmas!

A few people have asked what's on my Christmas list this year. I don't per say have a list, but more of a wish list.

My Christmas wish this year is to have happy healthy children for 2008. No more Doctor visits, no more CT's or MRI scans, no surgeries, none of it. The kids, Matt, and myself need a year to re coop from the last 2 years. ......I just want ONE YEAR - but I am so sad to say it's a wish I know deep down in my heart that won't come true.

What's on your Christmas wish list this year?

3 - 2 = 1

3 Kids, 2 down, 1 to go.

Today was ok. It was VERY effing stressfull, but we made it through. Meeting "B" was great! I think he was a bit overwhelmed with the crew that I bought in, but it went well. The kids really took well to him, too.

Carson and Cooper's appointment went fine, I guess. The team does agree that the holes in Carson's skull are still relatively large, but they think it will just take time. SO, we are still "sitting on the let's give it another 6 months" seat, which I hate. I guess I am just going to have to sit on my hands and wait it out. I will say, if 6 month to a year comes, and then someone tell us that they are going to need some assistance to close the holes, I maybe upset. But, we'll cross that bridge when we get there.

I will post Riley's news after the kids are in bed tonight.


Let's be frank......

Tomrrows that lucky, or unlucky day! I can't believe how long it has seemed since I made the appointment for Carson and Cooper to get their second opinions done.
To be frank........ I feel like I am going to throw up, pee my pants, have an anxiety attack, and go insane.
I have NO friggin' clue what is going to happen, and it freaks the Holy Mother of Mary out of me. To make matters worse, Riley will be taggin' along as well. I don't know what freaks me out more, knowing that Carson and Cooper MAY need a 2nd surgery to close the holes in their skulls, or that Riley could end up having brain surgery sooner than I thought? I know Riley is not in the "red flag" area yet, but having symptoms means it's getting a hell of a lot closer than I would like. I am hoping to become much more educated on Chiari Malformation tomorrow as well. I'm not sure what I'll do if I have to take her out of state to find the right doctor for her. Hopefully, "B", will be our guy.

I just feel like I am stretching myself so thin.

As many of you know, I having been trying to assist my friend's the Zoromski's with the situation with their daughter, Karly. Today, they left, and tomorrow all hell will break loose for them as well. My heart seems so weak as it is, that when I think of them, my heart just breaks and I instantly tear up.
This whole thing btwn our kids sucks. Why does it have to be during the holiday season? Seriously? Christmas has always been my favorite holiday. I love the decorations, I love the smells in the air, I love watching the twinkle in the kids eyes come Christmas morning, but you what, to be honest, I don't have that feeling this year, and again - to be frank, I'm not sure I'd care if it didn't come. Now doesn't that just stink to high heaven?


Damn you CHIARI!

(Sorry, Gram!)

I just want to start off by thanking everyone who has contacted me about getting hats for Karly. I have had a great amount of people interested, so Karly should have a nice warm head this winter! Thank you!

Do you ever feel like God is trying to take you down? Well, I am starting to feel that way. I think he maybe upset that I haven't been going to mass as much as I would like, but it's tough with 4 kids. I know, it's not a great excuse, but I know the couple who ends up sitting next to me thanks me if I don't bring them all in!

Something happened yesterday with Riley that set off my "mommy meter". For as long as Riley has been feeding herself, she has been taking FOREVER to eat. I mean, if you would let her sit for an hour, she would. But yesterday we were in a bit of a rush to get her ready for her bus.
She was eating yogurt with a baby spoon (which she chooses to eat with instead of an adult one) and she was taking tiny bites. I was getting frustrated and asked if I could help her. She agreed, well, not so much, but she allowed it. I covered half of the spoon with yogurt, put it in her mouth and......... SHE GAGGED, and spit it back out at me. That's when my sensors went off. Something wasn't right.
When her bus finally arrived, I talked to her bus aide, who is also a classroom helper, and asked her to watch Riley as she ate her meals.

Meanwhile, after all the kids were gone, I started pluggin' in to the computer. I emailed a neurosurgeon, and my wonderful friend, Kaci, and placed a call to our pediatrician. Our pediatrician told me to just make an appointment with our NS and keep her posted. Kaci - my dear friend through all this chiari and cranio crap, has been my lifesaver. I love her because she has been there, for one, and she tells me 100% straight forward - even if she knows it's going to freak the living daylights out of me!

So, after a little research, and emailing, I found that Riley has been having symptoms for sometime now.

* Not potty trained at night - and is getting worse - soaking her bed.

* Temperature sensitive - she's always hot and stripping clothes off.

* Has troubles eating thick texture foods.

* HATES loud nosies

* Has trouble with head pressure when flying

* Eating very slow - any distraction - might as well wrap it up.

* Balance issues - fell yesterday and could not get up. Teachers had to help her

............NEWS BREAK..............

Our neurologist's nurse just called, and our neurologist has recommend that we see a neurosurgeon as soon as possible. She has passed the word on to the NS department, and is trying to get Riley in.


* Complains of dry lips

* Has low muscle tone on rt. side of body.

I guess there was more there than what I thought . I guess I didn't really need to wait until the poor child has gagged on her food to mention all of this to the neurologist.

I feel bad. I feel like I have been putting Riley "on hold" while I figure everything out with Carson and Cooper. It just stinks!!!

Anyways, when Riley was dropped off yesterday, Kari, her bus aide mentioned to me the she only nibbles her food at school, and has been doing it for sometime now - and that she fell.

Can I just tell you, I am so overwhelmed with everything right now! I'm trying not to freak, but I know what will happen when things get bad enough - and it's scary.

I don't know how many of you caught the extreme home makeover episode, but that was WAY extreme, but even a little part of that is scary.

So, for now - I will try to keep my eyes open, do a lot of journaling, and hope for the best.


Riley says the darndest things

Converstation goes like this.

R - mom, I have a bump on the end of my tongue.

M- Really, let me see.

R - It hurts, what is it?

M - it's a canker sore.

R - oh, ok.

As I am tucking her in tonight, she says.....

R - mom, when will my cankersaurus go away?

M- LOL - soon honey.

Tag, you're it!

Trying to catch up on my blog! A few days ago I was tagged by annabanana to share 7 facts about myself.

So, here goes nothin'.....

The Easy Rules:

*Link to the person that tagged you, and post the rules on your blog.

Share 7 facts about yourself. Tag 7 random people at the end of your post, and include links to their blogs. Let each person know that they have been tagged by leaving a comment on their blog.

7 Random Facts:

1) As a mom of 2 sets of twins, I really kind of dig it, but would NOT suggest it!

2) Deep down, I hate that my kids have to get up and go to school - well, half of them anyways. I loved the times we had when we stayed in our jammies and played all day.

3) I really wish I got to experience natural birth with 1 child.

4) I HATE driving my mini van, and TOTALLY love to drive the suburban!

5) I wish we could move around the US more. A year here, a year there.....

6) I LOVE CHANGE! (I would rearrange my house every single day if my husband would allow it. He hates it!)

7) I would love to adopt another dog - again, if my husband would alllow it.

Ok, so thanks to the help of Nablopomo randomizer, here are the next people I tag.

* Tomorrow can wait

* Bee's Musings

* This Military Mama

* New York Portraits

* Kerry not Kelly

* Blogidy Blog

* Angelaboration~

Have Fun!!!


More ideas for Karly

OK, so besides the hats, here is what other items the Zoromski's could use:

"Other Ideas we've come up with:

1) Karly loves to get mail! Feel free to send her a card. If you want, send one to Braden, too! I think he's starting to feel a little left out. If you want our address, please email (or leave a comment) and I'll email it to you.

2) Dinner - we're tired. We're exhausted & overwhelmed - by doctor's appointments, phone calls and a million other things. I can't even describe what a relief it is to not have to think about what's for dinner at the end of the day. People have offered to drop off a dinner, and we've taken a couple people up on it. It's been WONDERFUL. We really appreciate it.

3) Money for meals at Children's Hospital.

4) We would use GIFT CARDS from the following places:

- Gas cards! Kwik Trip, Mobil, Express - wherever. We'll definitely be putting on the miles.

- Target

- Barnes & Noble or Amazon.com - Karly has received so many wonderful gifts; balloons, stuffed animals - it's hard to find her in her room!! With these types of gift cards, we can get her books, games or DVDs to help her pass the time.

- Family Video

- Toys R Us / Babies R Us - again good for items to help pass the time & some supplies we'll need for Ruby before we head to MKE again.

- Land's End (I want to get some good quality slippers for Karly)

* We've also set up a little "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 Karly entertained and happy.

Thankfully, we have excellent health insurance - and Karly now has a secondary, Medicaid insurance. We should be good for hospital and doctor bills, which is such a relief.

Please, please do NOT feel obligated to do anything - we just put together this list because so many people have been asking what they can do to help. And, if you have any other ideas of something Karly might enjoy or need during her chemo treatments, please let us know!"

If anyone has any questions about this, please feel free to email me at ladybug_wi@yahoo.com

Thanks to all who have offered. I KNOW the Zoromski's appreciate it all!


Yesterday, I took Cooper to the see Dr. Annika. She sent us to the hospital to have him x-rayed. Ladies and Gents.....It's BARELY December and we have pnemonia in our house. Poor guy is on an inhaler and some other stuff.
On the 6th, I go see the hand surgeon for my "trigger" finger, and on the 10th is the much awaited trip to UW Children's for Carson and Cooper's 2nd opinion. I can't wait!!!!!!!