Last chance

Tomorrow is the last day to vote for our Children's hospital to receive and AWESOME play area!

Please go here to vote : http://www.colgate.com/app/Colgate/US/Corp/CommunityPrograms/Starlight-Starbright-Childrens-Foundation.cvsp

Please click on WISCONSIN, and then Children's Hospital of Wisconsin.

This is where we see 4 other specialist. If Carson and Cooper would need any other cranio treatment, this is where we would go.
After seeing the playroom at University of Chicago - Comer, I believe EVERY hospital needs one!

Thank you for taking a few seconds out of your busy day to vote!

I found my fairy godmother.

Thanks to all of you for your generous thoughts. This just sucks. I know what is right for our family, but I also know we need a break - more like an escape from this hell we are in.

BUT - we have decided that we can't take a break right in the middle of hell.
Riley will just be 3 months post op, and we are still waiting to hear what to do with Carson and Cooper- CHW sent our NS their MRI's from 2006. Hopefully they won't need to be rescanned. And Keegan, we are not sure where he sits either. So, we will hold off.

In June, we are going on a family vacation (all 12 of us) to San Antonio,Texas for a little family reunion. We are staying on a ranch, and there will be tons of stuff for the kids to do.
So, that will have to be our vacation.

We will plan a trip to Disney next spring, depending on the health of the kids.

So on that note, we are getting a new roof.

Where is my fairy godmother when I need her?

I'm having a bit of a dilemma and need some advice. Everyone knows that we settled with the hospital over Riley's sponge issue. They are giving us an certain amount of money to take Riley, and the rest of the family on a trip to Disney.
From the get go, I told everyone that this is Riley's money. Not ours. She went through a horrific situation that was not necessary, and has been compensated for it.

Ok, here comes my dilemma.

We've just been told that we need a new roof on our house - like yesterday. The amount that we are receiving from the hospital will cover the cost of the roof.
Many people have told us that we should use the Riley money for the roof and then take the kids to Disney when Carson and Cooper are older.

My other dilemma.

If the hospital knew that we used the money for the roof, I'm not sure they'd be very happy.

I am torn between all of this. I know what we need, and I know what my heart says, and believe me, there not the same.

HELP!

Chiari bracelet making party

Thursday, I had my monthly Mothers of Multiples meeting and this month the activity was - making chiari bracelets! It was a ton of fun. Thanks everybody for helping us out!

Enjoy the pictures.

Laying on the bottom of the pool looking up

I really don't know what to say. I could sit here and swear up a storm, but not sure that will make any of this all better.

I called Dr. Frim's office yesterday to make an appointment for Keegan. After playing a few rounds of telephone tag, I finally got one made for May 8th - the same day as Riley's 3 month check up. It's a bit off, but I am just glad they didn't say May 8th 2009! That's how crazy busy they are.
Speaking of busy - I know a lot of you commented on how we heard the results of Keegan's MRI. You have to know Dr. Frim, and you have to know how EXTREMELY busy he is. Emailing is the best way to contact him. I email him almost everyday, and I get a response back every day. It's the easiest way. So no, we were happy to get an email.

Actually, I just got an email this morning. We were talking about how we would go about treating Keegan. As of this very minute, his symptoms are sensitivity to loud noises, and leg pain. Neither of these call for instant surgery. There has been some mentioning of the use of chronic neuropathic pain medicine. I am just not sure I am ready to use meds on him. But if things get bad, but not bad enough for surgery, what choice do I have? Let Keegan suffer in pain?

The other thing I have been talking to Frim about is the fact that Carson is still rocking herself. She will sit and thrust herself into the bottom of the couch, or against the bottom of a chair, and she does it all hours of the night. We've had CT's done by Dr. Jensen, our cranial facial doctor and he can't seem to find a rhyme to this reason, but when I asked to pick Dr. Frim's brain about it, he said there is a possibility of built up pressure that COULD be caused by chiari and to have her scanned would not be unreasonable. I just don't know if I m ready to take on anymore children with a chiari diagnoses yet.

I feel lost, I feel hopeless. I know I just need to take things one day at a time, but when I need to keep a household of 4 kids running everyday, I don't even want to get out of bed, no less the laundry, the dishes, the pick up of toys.......

You know living with 2 sets of twins under the age of 6 is hard enough, but when you throw in 4 children with 4 diagnoses, life becomes a ton more challenging- maybe unbearable is a better word.
I know Matt and I will get through this. I just hope we still like each other when we are old enough to look back and laugh.

Happy friggin' St. Patty's day!

Well, the shit never seems to stop around here. So much for the luck of the Irish!

I received an email from our NS with the results of Keegan's MRI. Keegan does indeed have Chiari malformation.

My husband and I are just devastated. Not sure what the plan of attack is just yet.

It will take a few days to sink in I'm sure.

Hope everyone elses luck is better today.

Tom would be so proud!

It's a fact. Our friend Tom would be so proud of Carson and Cooper.

It's also a fact that they LOVE to swear!

Damnit this. Damnit that. And who taught them to use it correctly?

Cooper even said, "Damnit Carson" for stealing his ride on tractor today!

And of course, Riley and Keegan just laugh.

Just a few things....

Children's hospital of Wisconsin ( Milwaukee) is in a contest to win a FUN CENTER.

It's up against St. Vincents in Green Bay and American Family Children's Hospital at
Univ. of Wisconsin -Madison.

Please go here to vote: http://www.colgate.com/app/Colgate/US/Corp/CommunityPrograms/Starlight-Starbright-Childrens-Foundation.cvsp

Please help OUR Children's hospital win. All you have to do is click on the state of Wisconsin and then click Children's Hospital of Wisconsin.


Voting goes through March 31st.


Second - Our bathroom is finally complete!!!!

Here are some pics of the old

And the NEW -

A shower door will be here in 2 weeks. I'll have to put up with a curtain just a bit longer.

I am hoping to hear something on Keegan's MRI today! I'll keep you posted.

Chiari coming out of the wood work

Ever since Riley had been diagnosed with Chiari Malformation, I have been obsessed with educating myself about it. For a short period of time since then, I had been consumed with learning about craniosynostosis as well. I may not have all the answers, and I know there is a ton left for me to learn, but man do I have the experience. If it was up to me, you should get by life on experiences.

Since we've been home from Riley's surgery, I have been hitting the internet hard with chiari research. I had also learned that 2 more children will be having surgery. 1 with our NS - Kristen and her son NJ, who is 9, and 1 with Dr. Iskandar at UW Madison - "M" and her daughter "L" who is 14.
I have been emailing back and forth with "M" as she is trying to prepare herself and her daughter for this surgery. It's hard to tell someone, "it's going to be OK" when there is no cure for this.
We can only hope and pray that both "L" and NJ will only need this one surgery. But there are no guarantees.

Tonight, I am meeting another mom who has an 18 month old with chiari and possible cranio. I have convinced her to go and see our NS in Chicago. Hopefully things will go well.

Now, as I sit here patiently (pulling my hair out, biting my nails, and eating everything in sight) waiting for the results of Keegan's MRI - I wonder, how rare IS Chiari Malformation?

It just seems like it is coming out of the walls lately.

I'm such a bad friend

Happy belated Birthday Meredith!!!

Sorry I missed it yesterday!

Hope you are feeling well, and had a fun day!

No News

For all of you waiting for the results of Keegan's MRI - you will have to hang tight a bit longer.

I have heard anything yet.

I got an email from our NS and he told me they view films on Fridays, but would get to Keegan's as soon as he could. I will keep you posted.

Sorry I have been behind on my "friends" posts. I just haven't been feeling like posting lately.

Maybe things will be better once I hear Keegan's results.

Keegan's MRI

Hi ~

Just wanted to let you know that Keegan was a CHAMP yesterday during his 4 hour MRI.

Keegan has a bit of an anxiety issue, and I truly thought it was going to show it's ugly face yesterday. But he totally surprised me. Not one tear, not one complaint - NOTHING! I couldn't believe this was my child! It was beautiful - which made my stress level a bit lower as well!

We are still waiting on our official report from our NS in Chicago. It may take awhile, but I will let you know as soon as I know something. The radiologist here said it was normal.

I had shared a few of his scans with a few of my "chiari" girlfriends, and we seem to all agree it's not quiet "normal".

Since chiari is still so hard to detect, there have been a good amount of missed chiari's.
This is why I won't be at ease until we hear from the expert himself.

Thanks for everyones thoughts and prayers.

Riley's "Sponge bob" meeting

Hey Everyone ~

The facts are back from Riley's "sponge bob" meeting.

I am sorry to say, that do to confidentiality, I am not able to post the findings publicly.

I will say that we are very happy that they are rewriting the protocals for sponge counting and we are very happy that are compensating Riley nicely.

Thank you Comer for making this easier on our family!

A cause for a cure

Thanks to Carol for the donation of all these beads!!!! Riley is still interested in making bracelets to help find a cure for this nasty thing called " Chiari Malformation". If you are interested in purchasing 1 or a few, check out the link on my side bar.

Thanks to everyone who is wearing them with pride!

No news from the big meeting yet.

News

Today at 3pm, the hospital and staff will be having the BIG "sponge" meeting. I should hear something tomorrow with all the details. I can't wait.

Also, Matt and I have decided to have Keegan scanned as well for chiari. He has been complaining about some weird leg pains, and is also becoming noise sensitive. He will go in on Friday for a 4 hour MRI.

Please keep him in your prayers.

A sad day in Wisconsin

Good Bye Brett. Thanks for the memories!

http://www.youtube.com/watch?v=HvDOHYy49V0&feature=related

http://www.youtube.com/watch?v=u8HAzI63X8Q

Bathroom

This is the construction going on in our home at the moment.

I was so hoping it was going ot be finished way before I brought Riley home from the hospital. Guess not!

This is what it looked like when Riley and I got home!

Add a little bounce to your day.

I saw this neat little questionaire on Michelle's blog -- My Semblance of Sanity. I thought it looked like fun so I decided to join in on the fun! ---

I also grabbed this off of BETH'S blog!

1. Who was your FIRST prom date? Nate W.
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2. Do you still talk to your FIRST love? Yes
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3. What was your FIRST alcoholic drink? Beer
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4. What was your FIRST job? Babysitting.

5. What was your FIRST car? Chevy malibu "grocery getter"

6. Who was the FIRST person to text you today? No one
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7. Who is the FIRST person you thought of this morning? Keegan , had to get him ready for school
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8. Who was your FIRST grade teacher? Mrs. Conrad
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9. Where did you go on your FIRST ride on an airplane? New Jersey to visit my grandmother
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10. Who was your FIRST best friend and are you still friends with them? Kerri Powers. Yes, we are still pretty close.
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11. What was your FIRST sport played? Swimming
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12. Where was your FIRST sleep over? You know, I can't remember my FIRST one.
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13. Who was the FIRST person you talked to today? My husband, as he was leaving for work.
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14. Whose wedding were you in the FIRST time? I have never stood up in a wedding. Thanks MIKE!
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15. What was the FIRST thing you did this morning? I got up to go to the bathroom in the BASEMENT since our other one is under HUGE construction!
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16. What was the FIRST concert you ever went to? Shanana. My frist date with my dad when I was like 8.
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17. FIRST tattoo or piercing? Pierced ears.
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18. FIRST foreign country you went to? Norway - with my grandma to visit realitives.

19. What was your FIRST run in with the law? My first speeding ticket (when I was 16) coming home from Nate's house.
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20. When was your FIRST detention? Never had a detention
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21. What was the FIRST state you lived in? Wisconsin
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22. Who was the FIRST person to break your heart? Do I have to tell? Check number 1.
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23. Who was your FIRST roommate? Stacy Beu
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24. Where did you go on your FIRST limo ride? From the airport to my grandmothers house in NJ.

....more bounce

Ok.....I stole a fun game from Beth who's site I just found - and it's a BLAST!!!

Thanks Beth!


Did you ever plan the game of Scattergories? It's a lot of fun, and here is a way to play it on your blog.
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"SCATTERGORIES" ...It's harder than it looks!
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Copy and paste into your blog and try it!
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Use the 1st letter of your name to answer each of the following --they have to be real places, names, things ...nothing made up! You CAN'T use your name for the boy/girl name question.

What is your name....................Cindy
4 Letter word........................Crap
Vehicle..............................Chevy
City.................................Charleston
Boy Name.............................Cooper
Girl Name............................Carson
Alcoholic Drink......................Cream de menth
Occupation...........................Clerk
Something you wear...................Charms
Celebrity............................Cindy Crawford
Food.................................Cheese
Something found in a bathroom........Crayon soap
Reason for being late................Carson and Cooper
Cartoon Character....................Chester the cheeta
Something you shout.................. CAREFUL!
Animal...............................Crab
Body part............................Chest
Word to describe you.................CRAZY!

# 3 ~ Erin

Oh my good friend Erin!!! We too have been through a ton in our few years of friendship.

Erin used to live 6 blocks from me. We met at a twins club meeting a little over 4 years ago. WOW, 4 years already!

Erin and her husband Brian have twin boys the same age as Riley and Keegan. And now, an ADORABLE little girl besides! Hailey is to die for. She's so dang cute!

When we first started our friendship, we used to see each other quiet often at play groups and just out and about in the neighborhood. As our relationship got "stronger" (that sounds sort of funny) we would have play dates of our own (that sounds even funnier).

As our children grew, so did we. Erin was my "go to" girlfriend when I was pregnant with Carson and Cooper. On November 12th 2005, as I was on the phone with Molly, my contractions started to come closer and closer. Molly told me to get off the phone and call the hospital. So I did. When the hospital told me to come in, I needed someone to watch Riley and Keegan. The first person I thought to call was Erin. She gratefully excepted, and was willing to come to our house until my parents could there. After making the decision to bring Carson and Cooper into this world 9 weeks early, it was very important to me to let Erin in on our decision. Erin's boys were also preemies and she had the knowledge of the NICU that we did not.

Erin was the first person other than family to see Carson and Cooper in the NICU. She was with me the first time the nurse asked if I wanted to hold them. I will never forget the look on my face when they asked me. I looked at Erin and she said, "Heck yeah, give her some lovin'"

Erin and Brian are godparents for Carson and Cooper.

Erin was there when Carson and Cooper had there cranio surgery and when Riley just had her Chiari surgery.

The saddest day for me was 2 yrs ago, Erin and her family moved 1.5 hours away. I don't get to see her as often as I'd like. Imostly see her now on our trips down to Children's hospital.

I miss her. I miss her friendship, I miss the kids interacting, I miss everything.

Thanks Erin for always being there!

I love ya!