Windy

Yesterday I tried taking everyone to the lake for a bit of a change. We packed up all of our snow gear and headed West. When we got there it was SO WINDY! I couldn't let the kids out to play or they would have blown away! So we played for a bit inside, packed everything back up and headed home. Sorry guys, we tried!

Riley

My beautiful first born daughter Riley.

So SASSY!

My favorite thing

Christmas Eve mass with 4 ding-a-lings.

I hope Santa was good to you! He was sure good to us.

I am actually typing on my OWN mini laptop.

Matt (I mean Santa) bought me a Dell inspiron mini 9' netbook!

It will be so handy when we need to make trips to New jersey or to our favorite hospitals!

Thanks Santa!

Merry Christmas

Merry Christmas

From our family to yours!

Have a safe, healthy, and happy holiday season!

My husband

My husband the DIE HARD Bears fan!

If Atlanta wins, the Bears are still in it. If the Vikings win, the Bears are OUT!

We've got proof!!

How is that for a picture???

(Don't get me wrong, I still hope the Packers beat the pants off the Bears Monday night like they did earlier this season!)

We are home from Chicago - Finally. With the crazy weather between here and there I wasn't sure we were going to make it home.

But we are and we had a great time in Chicago as always!

I love that hospital, I love the Ronald McDonald house, but I am sure hoping it will be a few months before we need to return again!

Please keep all of our friends who are recovering from surgery, at the RMDH, or still at Comer in your thoughts over this holiday season!

Our Christmas wish

To make it short and sweet, our prayers were answered. All of Carson's test came back pretty normal. Frim wants to give her brain and skull time to heal from her CVR that she had in August. Her blood flow is pretty normal and he didn't see any compression. He will be taking her scan to a conference after the new year to see what others think, but for now we will let her heal!!! AMEN!! No more further testing for another 6 - 12 months. YIPPY!

I could not have asked for more exciting news. It doesn't answer her rocking/banging questions, but we'll have to see what happens in time.

There are A LOT of kiddos here right now at the Ronald McDonald house. Mostly Frim's patients. Please say a little extra prayer for them over this holiday season. Some will be home for Christmas and some will not.

Thanks again for all your thoughts and prayers.

Chicago bears at Comer

OH MY GOSH! Here is the cat that was in the the bag!

After Carson's MRI yesterday, we headed to the playroom. At 4:00pm, Brain Urlacher and Greg Olsen - Chicago bears players, showed up to talk, and gave the kids presents. It was FANTASTIC! They flew under the public and hospital media radar so there were no cameras, no press, just the guys and the children. It was GREAT!

Both Greg and Brian also brought their fiance's. Brain's fiance' took a huge liking to Carson and was interested in taking her home. After the guys were done talking she personally took Carson over to Brain and had Brian sign her little blanket. It was too sweet!

After talking in the playroom, the guys headed upstairs and made rounds on the floor. I heard from a few families that the guys walked into the rooms and made themselves right at home.

How cool is that?

Thanks Brian and Greg for putting smiles on the kids faces yesterday!

Sorry Matt! Sorry you missed it all!!!

Posting from Comer Hospital

Hi!
Carson did great this morning with the Lumbar puncture and the MRV (MRI). It took a while to get the LP (4 tries) but finally they got it in and her pressure was 13. They tried to lower her to 6, but had a hard time - the CSF wanted to be a 8. After about 30 minutes it FINALLY went down to 6.5. We will have to see how she does at 6.5.

We won't know any info on the MRV until our appointment with Frim tomorrow. Keeping our fingers crossed that all goes well. We aren't out of the woods yet.

Getting here yesterday was a disaster. SNOW, SNOW, and more SNOW! It took us 8 hours to get here. It normally takes 3.5 hours. It stunk. There is supposed to be more ice and snow coming so it maybe Saturday before we even make it home. I guess we will have to wait and see what the weather brings.

We are here in the play room waiting for a HUGE surprise at 4pm. I will wait to report on that until tonight.

Thanks for all the thoughts and prayers today.

Weigh in Tuesday

Today we leave for Chicago so I thought I would weigh in a day early!

Todays loss: 2 lbs

Total loss: 17 lbs

Left to loose: 46lbs

I will post updates on Carson as the week goes.

Please keep her in your prayers.

Weigh in Wednesday and stuff

Ever since I found out that Carson was going to be needing more tests I have been a basket case. The decisions that Matt and I may have to make are HUGE, life changing ones. Not little by any means and I don't like it.
It's hard to get up in the morning, I don't want to clean, I don't want to do the laundry, I don't want to workout, I don't want to do anything, and I am afraid it's showing (please don't stop by my house for a visit...)
On top of all of that, I am TRYING to diet. It's coming off slowly, but it has been tough. I know I am a stress eater and right now I have a ton of STRESS and all I want to do is EAT!! It's taking every once of me not to blow it. PLUS, it's almost Christmas. I am not by any means even close to being done shopping, and with next week being shot in Chicago, I am running out of time - which is another stressor. WHAT IS A GIRL TO DO?!?!?!

Anyhow, here is my weigh in for this week.

This weeks loss: - 2 lbs

Total weight loss: - 15 lbs

Left to lose: 48 lbs

Here's hoping for a loss and not a gain next week!

Appointment

We got the call from Shannon today and Carson's MRV/LP will be on Wednesday Dec 17th at 9am. We will then see the neurosurgeon on the 18th at 2pm.

Carson update

It took a little while, but we finally have a game plan for Carson. I spoke with Frim the other night and we talked about what would be the best for her at this point in time.

Frim thinks that there could be a possibility that her superior sagittal (venous) sinus maybe compressed due to her craniosynostosis. During both cranial vault repairs, Jensen never removed any part of the sagittal bone, and just "widened" her skull - which was the game plan.

Now that she has been widened twice, Frim seems to believe that there could be pressure under her sagittal bone. What does that mean? That means that she is being scheduled for an MRV scan - to look at her blood vessels and blood flow, and a second lumbar puncture. I am hoping to know when the appointment is on Monday.

Carson had her 3 month post op last Thursday and that appointment went fine. I spoke to Jensen about the possibility of the sinus decompression. He is not game. He believes that if she would need a strip craniectomy, it would not be in her favor. Because she is now "older", if the sagittal bone is removed, it will not grow back. Meaning ~ she will have to undergo a 2nd surgery later on to replace the bone.

IF her sinuses are not compressed, and her LP is still elevated, than we would discuss a lumbar drain ~ which Jensen is not in favor of either.

I put my TOTAL faith in both of our doctors, and it is hard when they are split.
I am trying not to stress to much over all of this until we have results from the MRV and LP. But after ALL she has been through, it is hard not to think about what COULD be coming her way.

In a bitter sweet situation - I hope for test to be normal, but also need to figure out why she is rocking and banging her head.

Please keep her in your thoughts this holiday season ~ It could possibly end up being a tough one for her and our family.

* On a positive note, this is the season for giving, and BOY has our family been blessed. Last week we received a gift from an anonymous donor. We received over $1,000 in grocery and gas cards. I can't even being to tell you how Matt and I feel. It is truly amazing that even during these hard economical times, that people are still willing to give to families they may not even know.
To our donor - If you are reading..... I can't even being to tell you how we feel. We knew that someday the light at the end of our really long tunnel would shine, and because of your generosity, you brought that light closer to us! THANK YOU, from the bottom of our hearts!

Weigh in Wednesday and other news

Today, I am going to get right to the point with weigh in news.

I KICKED SOME ROYAL HINNEY this week! Even with Thanksgiving this past week I managed to control myself!!! I can not tell you how HARD it was. I LOVE Thanksgiving meals and it would have been SO easy to blow it. Mashed potatoes, stuffing, cranberries, turkey, and PIES!!! It makes my mouth water just thinking about it. BUT I didn't blow it and it paid off this week BIG time!

Today's loss ~ 4 lbs!

Total loss ~ 13lbs

Total left to go ~ 50lbs

Things are moving in the right direction and I am very happy about it!

Somethings I am not so sure about though - I received my call from Frim last night and we discussed Carson options.

This is the game plan. I will be taking her down to Chicago for an MRV scan. It's actually a MRI, but they use a different program to look at the blood vessels. She will also have another LP at that time. Then a couple of things can happen -

1. IF her sinuses (sinuses around the brain, not face, like I thought it was) are compressed, they will do a sinus decompression. I am hoping to learn more about that on Thursday. Frim seems to think the sinuses could be compressed from her craniosynostosis.


2. IF her sinuses are NOT compressed, but her LP is high again, then we will talk about a lumbar drain trial.

3. IF her sinuses are NOT compressed, and her LP is low, then we just sit, wait, and watch (which doesn't help her rocking or lack of sleep) and he may refer us to a neurologist.

So, today I will be calling to make the MRV/LP appointment.

Tomorrow we go to see Dr. Jensen for her 3 month check up. Hopefully he can shed some light on the sinus issue.

That's where we sit for right now. I will post again once I know more tomorrow.

Alas, Children updates

I know it's been awhile since I've update on the kiddos - so here it goes.

* Riley ~ Is loving kindergarten. She is ever so slowly coming back out of her shell. Riley had a really hard time after her chiari decompression surgery. She went in my out going loving child, and came home a very terrified, scared of her shadow little girl. I'd hate to say she was traumatised by the 2 surgeries, but I can't figure out what else could have caused it.
She had her year post op appointment with Frim in November. She had a MRI and a lumbar puncture and all went well. She's doing great. She is also involved with swimming lessons and loves it. It think the more active I can get her, the more the "old" Riley will come back - I hope.

* Keegan ~ is enjoying his new girlfriend. Yes, you read correctly! They send love notes back and forth, and "Mom, can you make her some barrettes....." Some days I swear it's the only reason he goes to school. He is also involved with Karate and is having a blast. Let me tell ya, he keeps me on my toes. Keegan is managing his chiari pretty well. He has the normal headaches and pains that go along with it, but for the most party he has been pretty strong.

*Cooper ~ OH COOPER. I swore to god when this child was born he was the answer to all of my prayers. He was quiet, calm, never cried, just the best baby anyone could ever have. It was the same when he was 1, and when he was 2....... AND THEN..... He turned THREE! OMG! He is the wild MAN! I love him to death but whom ever put the energizer bunny in him is going to pay!


* And then there is little Miss Carson ~ What can I say. I'm tired. This girl runs me down emotionally, physically, and psychologically. She has got her own plans, her own agenda and if you are not on board with her - WATCH OUT!
My mom always tells me that we woman come from a long line of strong women. Let me tell you.... Carson is a strong little woman, and she is only THREE!
Thursday Carson will have her 3 month post op check up with Dr. Jensen. My plan - to have good news. I am still waiting to hear from Frim. There are a few option that we are looking at for her. I will let you know more, when I am more certain about things.

So there you have it. A mini run down on the kiddos. As for Matt and I, well, we are hanging in there.
My mato: ONE DAY AT A TIME!