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.