A confirmation

Well, Nothing to exciting yet on Carson. We did hear something yesterday from the CFS. He and a NS agreed that she will need the ICP probe placed and monitored. When this surgery and monitoring will occur? I am still waiting to hear. Hopefully Monday we will get some more news.

Today was Keegans last day of school! Hurray!

The other 3 are at the lake with my parents so we have been doing some bonding. Next Saturday we pack up and head to Texas to see my cousins. There is 12 of us going...It should be a good time!

When we get home, Riley and Keegan will be going to a kindergarten readiness class for a month. We also have then signed up to take golf lessions. That should be a hoot.

Well, That's about all that is going on around here. I will post when I head more from the doctors.

HI

Nothing new to post yet.....still waiting.

Balls and all...

OK, So I have decided to remove the "negativity" from this blog and continue on with our journey (hope that's ok with you all).

I need to positives right now, not to think about the negative....

Thank you so much for all your support.

Pulling up my big girl undies

Sorry I haven't had much time to blog lately, but I have been somewhat out of commission.

So you know the results from our Chicago trip.
Monday, I had surgery to repair my trigger finger on my right hand.

Wed. I was at the bead store, I missed a step fell on my surgically repaired finger, and rolled my ankle.

Wed. night when I was in Milwaukee I could night stand the pain, I couldn't not walk, so I walked into the urgent care. Sure shit, the rolling of my ankle ended up being being a hairline fracture in a small bone in my foot. So now I am in a air cast, and a wrap on the 5 stitches in my palm.
Ok, So this blog is not about me.......

So, the Dr. Jensen appointment......
Cooper will need to have another CT, he does think something is going on with the shape e of his skull, but nothing that will hurt him right now. So, he will be put on the back burner until we get Carson figured out.

Carson....I should hear something tomorrow or early next week about getting an appointment with the NS to chat about the ICP - probe. It is a fact that her head is no longer growing faster than her brain. Her brain is trying to push out at the top front of her skull, and out the back.
IF she does have elevated ICP, she will need a skull reconstruction revision. If not, then we will go back to Dr. Frim and assume it's the chiari.
So, no great news.... Hopefully we will get an appointment with the NS next week.

Also, I am going to be very brief about it, but we will no long be having the benefit for our family.

Mother's day

HAPPY MOTHER'S DAY to all you FANTASTIC mothers!
I wish you the best on this day dedicated to you! Sit back, put your feet up, eat everything in site, let your laundry piles reach the ceiling, let your kids write their names in the dust, and watch the tumbleweeds of dog hair roll by!
As for my article in the Chi.Trib., it didn't happen today. The reporter said the earliest would be Sunday, so I'll check again tomorrow.

I'll keep you posted.

Thank you BECKY for the wonderful arrangement of purple flowers!!! It made my day!

Just another poopy day in paradise

After soaking up everything I had been told yesterday and today, I think I am ready to spill the beans. Once again, no small talk.

It's a fact that Carson has both craniosynostosis and chiari malformation. The issue that we are having is that Carson is still rocking and thumping the back of her head. At this point, we are not sure if the cranio is causing the rocking (ICP - intercranial pressure), or if the chiari it's self is causing it.
So, yesterday while we were in Chicago, Dr Frim felt Carson's head and said he thought that her skull may have fused again prematurely. She also has a huge bump just above the hairline that has been questionable.
Frim seems to think that her skull is no longer growing fast enough for her brain, and that her brain is starting to push out anywhere it can.
He also believes in "fixing" the cranio issues before attacking the chiari issues.
With that being said, I spoke with Dr. Jensen. We have an appointment with him and possibly Dr. Kaufman (NS) . We need to figure out if her skull did indeed stop growing and to see if there is ICP.

Thursday, she will have a CT done, and then the appointment.

Jensen also thought that Kaufman may what to monitor her for awhile with a ICP monitor - probe. They would do a mini craniectomy and place a probe in between her dura and her brain and watch her in the hospital for a few days. This should tell us if she is having high ICP or not.

If here skull is not growing, I am afraid to say that they may have to do a revision of the CVR surgery that they did in Aug of 06. If that helps her with the rocking, then Frim will just watch her and see how her chiari develops. If it doesn't help, then there could be a possibility of a decompression surgery as well.

So, that's where we are sitting right now.

I am drained, I am exhausted. Between Chicago, and Milwaukee this coming week, I am just fried.
Matt and I got away tonight (thanks Gayle and Jim!) and to be honest we talked a bit, but it was VERY hard not to talk about what is to come with the kids. It just stinks. More time in the hospital, more time away from the other kids, more surgeries. I am starting to think I will not know life any different then all of this. It just SUCKS!

We are honestly trying to hang on, but each day becomes more and more trying. Will we be strong enough for each other? Will we make it financially, emotionally, physically??? Right now? I think we are drowning in every aspect. I think our hole has been dug SO deep I am not sure we will ever get back to whatever NORMAL is.

Oh well, this is the path god has given me. So - I better sit down, shut up, and hang on. It's bound to get worse.

Chicago Tribune

Ok, no small talk I'll get right to the update.

Riley~ Wonderful, awesome, fantastic!!! Couldn't have asked for a better check up! She is thriving and doing well - physically.

Keegan ~ Has Chiari. We will wait and see how things go for awhile. No need for surgery yet.

Cooper~ NO CHIARI!!! He will be my contact sport child!

and

Little Miss Carson ~ She has Chiari, but.... she also has a lot more going on. I am almost afriad to start talking about it all. I think for tonight, I will let things sink in before I try to type it out. It 's not good news, and I am afriad we may be in for a long haul with her.
I hate to leave you hanging, but it think it is for the best.

I did speak with our CF surgeon at Children's tonight, and it sounds like they will do some testing before a path is decided on. I will post more soon. I promise.

Oh, and Tuesday night, the manager from the RMDH called to see if I would be interested in talking with a reporter from the Chicago Tribune on Wed. I agreed. So, last night I met with the reporter who is doing a story on families who stay at the RMDH and see Dr. Frim.
The story should be in this Sundays Chicago Tribune paper. It should be fun to read. I can't wait to see it!

So, We've had some great news....Cooper and Riley, Good news with Keegan, and some not so good news with Carson.

I am just trying to process everything and pass on the news to Matt.

Thank you for all your thoughts and prayers.

ALSO, This is to whoever dropped off the Tumbleweed gift card tonight.

THANK YOU!!

Chi town

It's almost Wednesday! Chicago - here we come! I am so excited, but nervous at the same time!!! I will post as soon as I know something on Thursday.

Thanks for all the thoughts and prayers.

If it's not one head, it's another

Today, I noticed for the first time that Cooper's head is sinking in (or just flatting out) on both sides of his head. Let me tell you, It is making me effing nervous! I have NEVER noticed it before. Now all of a sudden 2 flat spots; one on each side of his head. Good friggin gravy!

Thank goodness we are headed to Chicago on Wednesday /Thursday is the appointment. Then on the 15th we will be headed down to Children's to see Dr. Jensen - our cranial facial doc.

These next 2 weeks are going to be very nerve wracking for us. Thursday we will find out if:



* Keegan will need surgery or not.


* Carson will need surgery or not.


* Cooper has chiari or not.



Then next Monday (the 12th) I will have surgery on my wigged out finger.

Wednesday(the 15th) we will find out how Carson and Cooper's skull are healing from the cranio surgery ( just about 2 yrs ago.).


If I can make it through these next 2 weeks, I should be free for a little while.


I guess the worst thing that could possibly happen is;


-Both Keegan and Cars both need surgery,


-Coop has chiari


- then Cars and Coop would need a skull repair to help heal their skulls.


Now that's not all bad, RIGHT? I can only go UP from there, RIGHT?

Cough, Cough, Choke, Choke, EEKKK!!!


Oh, and the good news is??? I get to see my pregnant friend Molly on this trip to Chicago!!! WAHOO!!!!


Can you tell I am a bit STRESSED?!


Also, would you please say a little prayer for my friend Amanda who had major surgery last week. She is not doing very well and is back in the hospital. Thank you.

Benefit

I have really been pondering to bring this out to the public or not, but after the bout with Keegan yesterday I thought, "oh, what the hell!"

A few weeks ago, my girlfriend Amanda mentioned to me that she would like to set up a benefit for our family. Between all the medical bills, and our travel back and forth to Chicago, things haven't been easy. Now, I am NOT one to ask for a hand out - and really, I am more like my mom - just smile, nod, and keep it inside. It's hard for me to accept help from others.

I really don't know how to accept any of this, but on the other hand, I think it would be fun.

As of now, we are working hard on trying to set up a 3 on 3 basketball tournament at AWHS. I'm just not real sure on how to go about it. Amanda just had major surgery a few days ago, so I am trying to pick up some slack so she can rest, relax, and not have to worry about anything but getting better.

I do believe we will be going around town and asking for donation from local businesses for a silent auction. I have mentioned this before, but Amanda is first cousins with Brian Butch - a star Wisconsin Badger basketball player who graduated from AWHS as well. He has autographed a few items for the auction and we are hoping he and maybe a few of his Badger friends will make an appearance.

If anyone has ever done a benefit, please speak up. We would love to hear your ideas.

Thanks.

Punked?

Today has been a really long day.

It started out by taking Riley to school and leaving her there by H.E.R.S.E.L.F!!! Yeah! There's only like 3 weeks left. So, if she's feeling up to it and school is willing, why not?

While she was at school, my mom and I rumbled through Target and hit a few rummage sales along the way.

At 12:30p, Keegan teacher calls me from school to let me know that there is an issue with Keegan. After lunch he became very fatigued. He could not hold his head up, his eyes had a hard time staying open and she asked what she should do. A few minutes later I went to get him. He was just about in tears....... I'm thinking it's another ugly symptom of our friend chiari. DANG IT!

At 2:50 I had my 2nd appointment with the hand surgeon to see what he could do about my sever trigger finger. It's the middle finger on my right hand and it hurts like nobodies business.
In December I made my first trip to see him and he game me a cortisone injection (in front of my 4 kids might I add. He kept telling me," you have to be tough, you have an audience". Man it hurt like a mother! The meds worked for about a week or so and then nothing. It went back to being a pain in my hinney. In between Dec. and today I have been a little busy. There was no room for me time. So, when I saw the doc today he says,"ah, your finger looks terrible. We need to fix this. I would recommend surgery, NOW. Oh, and by the way - why did you wait so long to come back in?" I about died laughing. So I told him WHY I haven't been in to see him.

He did tell me that he would be able to fix the "locking" issue with my finger, but he feels that the 15 degree arch it has maybe be permanent. He is suggesting intense therapy after surgery to see if we can get the finger to go back straight. Lovely. Like I have time to piddle around with my MINOR surgeries when I have bigger and more serious fish frying!

Dinner time rolls around and we are having pizza. Carson decides to feed the puppy, Riley dumps her milk, Cooper is refusing to eat, and Keegan is being typical Keegan.

After today, I just about threw in the white flag!!!

I am so hoping that one of these days a camera is going to pop out from behind my chair and tell me I'VE BEEN PUNKED!