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!

Crazy fun!

Can I just start by saying - I am SO tired today! Anyone want to jab at why??? You guessed it. I was one of the crazies standing in line in the middle of the night.

Last year was my first year shopping on Black Friday, and I have to admit, it was sort fun - crazy fun! But last year I only started at 6am. This year I got a little more adventuresome and was in line at Kohl's at 3:45 am! There must have been 1,000 people plus by the time I got in line. I just couldn't believe it. Luckily, it really wasn't all that cold, only like 20 degrees.

As they opened the SINGLE door, trying to get everyone to form a single line, I thought, "by the time I get in, the 2 things I came for will be gone. Would it be worth standing in this line? Sure it would."
It took a good 10 minutes to squeeze my way through the single door - the single file line, NOT happening. I rushed to the toy department and there they were - only 2 left......MINE! It was a success!!!
On my way to check out I also browsed through my department and swiped up at pair of jeans and sweater, too!
So now, my buns are dragging, BADLY.

Come Christmas, it will be all worth it!

Anyone else have any good Black Friday stories?

Weigh in Wednesday

Oh my, I can't believe a week has gone by already and I haven't posted. Seriously - the days need to SSSLLLOOOWWW down!

Not much has been going on this past week. I have sick kiddos - Keegan missed 2 days last week, Cooper is coughing up a storm, which means his asthma is kicking in. Carson is the last to get it. Her eyes are all blood shot, runny nose, crankies.......
Keegan also mentioned to me that his ear hurts, so after hair cuts today we will be making a (which seems to be a weekly trip) to the doctors. UGH.

As for me, not much is going on. I have been living at the Y getting in as much cardio as possible. My mom and I try to get a workout in together at least once a week, but sometimes that isn't even possible. She is doing a great job. I am proud of her for going.

So, today is Weigh in Wednesday.

This week = -4lbs

Total weight loss= - 9lbs

ONLY 54 more to go!!

A little update on Carson. After her lumbar puncture 2 weeks ago, she seemed to do real well for about 24 - 30 hours. Then she seemed to have gone down hill a bit. She is hardly sleeping, rocking all hours of the night, and truthfully, I don't know how Riley sleeps through it, irritated, and complains that her head hurts. So, I emailed with Frim and he wants to talk about what options we have for her. So, until he calls, we will just have to wait and watch.

Tomorrow is Thanksgiving and I know I have a lot to be thankful for - starting with my family, our friends, and our medical teams at Children's Hospital of Wisconsin and University of Chicago.

Thank you, all of you, from the bottom of my heart!

Happy Thanksgiving to all of you!

Weigh in Wednesday

So, it's been a LONG week. LAst week was a great weigh in. I had lost 5 lbs. This week I have been up and down - leaving me a ZERO!

Last Wednesday we were in Chicago for some tests and a doctor appointment. That trip turned into 2 days. We finally arrived home on Friday at 6pm. Then, Saturday was Carson and Cooper's 3 rd birthday party - which was a blast, but not so good for the diet.

So, my scale went like this =>

Wed - Sat = + 3lbs

Sun - Wed morning = -3 lbs.

So - here I sit at ZERO!

Week 1 - 5lbs

Week 2 - 0 lbs

Here's hoping for a kick ass week!!!

Christmas

My friend Kelly (who's son also has Chiari) sent this to me. I thought it was kind of cute.

1. Wrapping paper or gift bags? Wrapping

2. Real tree or Artificial? Fake normally, hoping for a REAL tree this year

3. When do you put up the tree -the weekend after Thanksgiving - LOVE Christmas time!

4. When do you take the tree down? New Year's Day

5. Do you like eggnog? It's alright

6. Favorite gift received as a child? my blue schwim 10 speed bike

7. Hardest person to buy for? Matt

8. Easiest person to buy for? The kids

9. Do you have a nativity scene? Yes : Veggie tales for the kids and 1 for the adults.

10. Mail or email Christmas cards? Mail

11. Worst Christmas gift you ever received? ???

12. Favorite Christmas Movie? While you were sleeping & Polar Express

13. When do you start shopping for Christmas? Usually November

14. Have you ever recycled a Christmas present? You bet

15. Favorite thing to eat at Christmas? Mom's golden gram mix

16. Lights on the tree? White lights

17. Favorite Christmas song? When my heart finds Christmas

18. Travel at Christmas or stay home? Home

19. Can you name all of Santa's reindeer's? Yes

20. Angel on the tree top or a star? Star

21. Open the presents Christmas Eve or morning? We start Christmas Eve (family gifts) and Christmas morning from Santa

22. Most annoying thing about this time of the year? Nothing, I Love Christmas

23. Favorite ornament theme or color? The kids ornaments

24. Favorite for Christmas dinner? BBQ ribs, ham, mashed potatoes.......

25. What do you want for Christmas this year? For my children to be healthy

Prayers needed please

Today, my friend Jo's little girl, Abby, underwent her first (and hopefully only) cranial vault repair at Children's hospital of Wisconsin. Her surgeons were the same as Carson's.

Please keep this family, especially Abby, in your prayers. We personally know how hard the next 72 hours can be on the child and family.

I have not heard from Jo, but I can only assume that Abby is resting in the PICU tonight.

Here's to Jo, Abby, and the rest of the family - Hang in there, she will turn the corner soon!
Call me if you need to chat!
Hugs!

Happy Birthday Carson and Cooper!!!

With all that has gone on in the last few days, I was not able to get birth pics up of the kiddos.

I know I am a POOPY mom for doing this, but click here to see pics.

Happy Bithday KIDDOS! It seems like just yesterday we were living at the NICU!!

Thanks for all the great memories over these past 3 yrs!

LOVE YOU!!

I watched it!

Today, I put my stomach to the test and watched Carson's lumbar puncture. O.M.G.!!! Is all I have to say about that.

Carson did alright. Even though she was put out, and the area they poked was numb, she still squirmed when the poked her. It was hard to watch, but I thought if she and Riley are tough enough to go through it, I need to be tough enough to watch what's being done.

So yesterday, Riley was at 12, and they lowered her pressure to 6. This morning, Carson was at 18 and they lowered her to 8. Because she was a bit higher than what Frim told us she should be (btwn 5 - 15), we will watcher her for a few days to see how she reacts to her pressure being lowered. I will contact Frim and crew in about a week to see where we are at.

We are hoping to see some improvement in behavior and rocking.

Today, we also met Anne, our all time favorite child life specialist. She talked to us about an AWESOME new program that they have started Thursday with just a few departments at Comer - Neurosurgery being one of them.

They started a program called "Beads of courage". Here is a picture of what I am talking about.

Every child with a serious illness, who goes through hell and back, gets beads. As a chiari patient, she gets beads. Each colored bead represents a single procedure. She has 2 stars for 2 surgeries (1 surgery because of an OOPPS from the 1st one), in the bag, she got a COURAGE BEAD, the ladybug bead is very SPECIAL. I will not say what it is for, but MANY of you can guess. It's from an incident that happened during her surgery. Each time from here on out, for every poke, scan, NPO, etc.....the kids will get a bead.

I think it's a very cool idea and it shows how tough these chiari kids can be! Carson and Keegan also received a few beads as well.

Thanks ANNE, and the rest of you for getting this program started. The kids just love it.

Chicago - take 2

Today was a really long day! Riley was a champ and came through with flying colors. Her appointment with Frim went well, too! We talked about her headaches and agreed to watch it for a few more weeks before we decide if she needs stronger meds.

Carson on the other hand, appointment wasn't so well. She indeed has psuedotumor (from te ICP monitor report and will have her lumbar puncture /spinal tomorrow - SURPRISE. I had no idea. So, we are here another night. AAKK! I was so hoping to be home to get ready for the birthday party on Saturday.

So, Carson will be poked, they will lower her pressure to half, and then set her free.
Today, Riley's pressure was at 12 and was lowered to 6. She is doing really well.

We will watch Carson for 3 - 5 days and see how she does with lower pressure. If she does well with lower pressure, we will talk about putting her on mes for awhile then a possible drain trial. It could be a long couple of weeks...never mind the driving back and forth. UGH!

Please keep Carson in your prayers tomorrow at 9am.

Thanks.

Chicago

Today is our lucky day. A day to try and get as many answers as we can from Dr. Frim.

Riley has her MRI and Spinal tap at 11am, so please keep her in your thoughts and prayers.

After that, both girls will wait in a VERY LONG LINE to see Dr. Frim. I am hoping that Riley is feeling well enough to come home tonight, if not we will be staying one more night and head home tomorrow.

Here's to a VERY long , emotional, day!

Weigh in Wednesday & Picture

Good Wednesday Morning!

I have to say my first 3/4 of a week has gone great. I love having my time at the YMCA working out and I think it's what the doctor ordered - plus, I am away from the kiddos for a bit!

I am really 2 days shy of a week because I started my workouts and diet last Friday, but because we will be in Chicago Wednesday, Thursday, and possibly Friday, I thought today would be a good day to check in.

I am really surprised how well my body just started back up again. It's like I never took a break from working out. I have even accomplished something I have never done before - I am up to 30 minutes on the eliptical - YAHOO!! My goal is to make it to 45 minutes and then up the intensity. But for right now, I am happy with 30 minutes on the weight loss interval program!
I am also riding the bike and walking on the tread mill.

My mom has been going as well. We try to make it at least twice a week together. She's doing GREAT!

So, for today weigh in......

Weight loss: 5 lbs (5 days)

I will weigh again on Friday just to see where I would be for a full week.

I am a bit nervous being away from a fitness center for 2 days, but maybe I can walk laps around the hospital while Riley is in the MRI.

Check in on Friday for a full weeks report.

We also have big news! Check this out!

Questions

Here are a few fun facts from my friend Anne!

1. Do you like blue cheese? NO

2. Have you ever smoked heroin? NO

3. Do you own a gun? I used too - Police academy

4. Wax or Shave your body parts? Shave

5. Do you get nervous before doctor appointments? Not anymore

6. Real or fake nails? real

7. Favorite Christmas song? When my heart finds christmas.

8. What do you prefer to drink in the morning? Orange juice. Do I no - It's not on the diet

9. Can you do push ups? Yes

10. What's your Favorite piece of jewelry? Wedding band

11. Favorite hobby? Shopping

12. Do you have A.D.D.? No

13. What's one trait that you hate about yourself? I love to eat

14. Name 3 thoughts at this exact moment:

~1. I need to shower - just got home from the gym.
~2. I have to get going on making dinner.
~3. Go Pack beat the VIKINGS!

15. Name 3 drinks you regularly drink? Water, cyrstal light, and tea

16. Current worry right now? Riley's MRI and spinal tap on Thursday.

17. Current hate right now? being overweight

18. Favorite place to be? Home

19. How did you bring in the New Year? With family

20. Like to camp? not really

21. Name three people who will complete this? Not sure

22. Do you own slippers? yes

23. What color shirt are you wearing? White

24. Do you like sleeping on satin sheets? No

25. Can you whistle? Yes

26. Favorite color? Red

27. Would you be a pirate? No

28. What songs do you sing in the shower? I don't.

29. Favorite girl's name? Ryann

30. Favorite boy's name? Charlie

31. What's in your pocket right now? YMCA ID card - Just home from the Y

32 Last thing that made you laugh? Carson

33. Best bed sheets as a kid? Strawberry short cake

34. Worst injury you've ever had? Broken Wrist

35. Do you love where you live? Somedays

36. How many TV’s do you have in your house? 5

37. Who is your loudest friend? Matt

38. How many pets do you have? 1 dog and a hermit crab

39. Does someone have a crush on you? yes

40. What is your favorite book? It's time for bed (kids book!)

41. What is your favorite candy? Skittles

42. Favorite Sports Team? PACKERS

43. First thought when you woke up? They are up ALREADY!

44. Worst habit? using our bedroom as a closet

45. Do you play an instrument? used too

46. How long does it take you to get to work? 0 minutes!

47. If you could eat anything in the world right this second. A gyro

48 . Do you like the person who sent this to you? Absolutely!


Ok, it's your turn to answer.

I tag:

1. Lost a sock
2. Zoromski
3 snip snails and pigtails
4. Driver of the big black bus
5. Pastore Villa

It's BACK!

We've got SNOW!

Let me tell you, the kids are DYING to get their snow gear on and go out and play!!!!
So far, the only kid that's getting to play is this one!!!

I've been tagged

Ok, so I have been tagged by my dear friend Kristen at Snip Snails and Pigtails

Here is my 6th picture in my 6th picture file........

This picture is when Carson had her 2nd cranio surgery and we were trying on hats...




So anyhow, here are the rules for this Picture MeMe:

* Go to your sixth Picture Folder then pick your sixth picture.
* Hope that you remember the details and write a post about your tag/photo.
* Tag 5 others…

So, I TAG~

1. Lost a sock
2. Who says 8 is enough
3. Pastore Villa
4. Zoromski's
5. J & J online

Have fun!

The begining of the end

TODAY.IS.THE.DAY!!

As many of you followed my quest to loose weight last year, I am sad to say I am here AGAIN!

Somehow (yea, like I don't know), after 1 - brain surgery, 1 - "probe sticking out of head" surgery, and a second total skull reconstruction, I have managed to put more then 3/4Th of the weight BACK ON! What is it with me and Hospitals!!!

I am actually on a quest to get children's hospital to have a fitness center for parents who's children are admitted. Anyhow, that's a different issue....

So today, I am back at it again. We joined the YMCA, and today, my mom and I are starting a 12 week personal fitness program where we have to be there no less then 3 days a week!! They have daycare too! That's a bonus right there!

If I can just keep my darling children OUT of the hospital, I should do OK!

For support, I maybe posting here once a week. I am hoping it will keep me on track. If I can't be honest with my computer screen, how can I be honest with myself?!?

Cooper's vote

Cooper's pulling for "BROCK OBAMA"!

As I went to vote this morning with the 2 little ones, Cooper told the wonderful ladies at our ward table that he was voting for "BROCK OBAMA".

The little old ladies looked at each other and said nicely to him" Oh honey, you are to young to vote". My child INSTANTLY bawled . As I consoled him, he turned to the ladies and said, "I help mommy vote for "BROCK OBAMA".

And so we did.

I think we've made it

FEEWWW- it was a long week last week and I am so glad it is over! Finally OVER!

It started off last week with Keegan, who decided it would be fun to get the stomach flu on Saturday. Thank goodness it only last 24 hours. Then Carson got it on Sun night/ Monday morning, with me following Monday morning. Then, I started to get nervous because we had a big trip to Indiana planned and Carson had her appointment with Dr. Havlik at Riley children's on Wed.

I ended up cancelling her appointment in Indy, and was hoping by Wed morning that we'd all be back witht he living.

Not so much.

Cooper came down with it in the middle of the night on Tuesday, but we still decided to make the trip to Matt's family in Ft. Wayne on Wed. All was good in the car and had no major incidents.

We arrived at my MIL's on Wednesday afternoon, checked into the hotel, and PRAYED TO GOD no one else (Riley or Matt) was going to be sick.

We made it through Thursday, and thank heavens we even made it through trick or treating Thursday night. But that was the end. Riley got it at 10pm Thursday night - and Matt got it Saturday morning. AAKK!

Y____U____C_____K!!!

Even though we had some bouts with upset tummies, we had a great time in Indiana - as always.

Here's to hoping we didn't leave any flu bugs behind for anyone else!!!

Up coming agenda:

* Riley and Carson have an appointment with Dr Frim in Chicago on Nov 13th. My mom and I will be taking the girls. Riley is scheduled for a MRI and a lumbar puncture, and Carson will just be looked at. Still trying to figure out the rocking.

* Carson and Cooper's 3rd birthday on Nov. 15th! THREE - already??

Bugs, bugs and more bugs

Let me tell you, I think I have gotten my moneys worth out of my washing machine! It seriously has been running NON STOP for almost 3 weeks now. And I am talking DAWN TO DUSK!

After our eventful scare with scabies - which turned out NOT to be scabies, Saturday Keegan came down with the 24 hour stomach bug. Vomiting, diarrhea and all. Monday, at 2:30 am, Carson came down with it, and then me on Monday at 9am. Thank goodness for my mom. I didn't move off the couch the entire day, and when Matt got home I turned everything over to him and I called it a day!!! Tuesday morning I was a total different person then the 24 hours prior.
I am keeping my fingers crossed that Cooper, Riley, and Matt don't catch it!

So, that's what's been up with us!!

How about you?

Round and round we go, where we will stop, nobody knows

I must say it's been a whirlwind of a day.

Talked to a friend just this morning about getting a steamer to get rid of this bug once and for all. I would be able to steam the floors, beds, carpets....just about everything. Something has got to do the trick.

Around noon today, I called the peds office to see if I could get Carson and Cooper checked out. I was able to get in today at 1pm.

So, we get to the doctors, Carson lifts up her shirt, and the doc says, "Ya know, I don't think it is scabies. I think it is something called ~ unilateral lateral thoracic exanthem." It's a virus rash.

Now, I can't even link it because I can't seem to find it. She said it's called that because it does not cross the mid section of the body and just stays on the belly/rib /arm section.

So, now I am totally baffled, I don't know what to believe. After ALL THE WASHING AND CLEANING I HAVE BEEN DOING, stressing about damn bugs.......

OMG!

This would only happen to me.

Have I been PUNKED?

Anyone have any experience with this? Or ever heard of it???

Still at it

I am still trying to fend off these little mites!

If things don't get better soon we will have to cancel our trip to Indiana!

So, If ANYONE has ANY suggestions, I am all ears!

Ok, here it goes....

I have just about dried my eyes from our very eventful week.

So, I know some of you are thinking "What the hell is going on with them", well......

Carson picked up what the doctors seem to think is scabies - skin lice.

It has been horrible......washing sheets, cleaning rooms top to bottom, washing clothes, vacuuming, treating the dog, treating ALL of us with medication......IT HAS BEEN ~ HE dbl hockey sticks. Give me brain surgery, give me skull reconstruction ~ I can handle it, give me something I can't see and I go NUTS!

So far, Carson has been the only one to get this bug, and hasn't had any more bumps since she was treat with meds on Monday night. PRAYING VERY HARD THIS IS IT!

Monday will be a week, after a week the doctors seemed to think things should be in my favor.

So far = MOM 1 - Bugs 0

You will not believe

Ok, I know I haven't posted for awhile, but I have a reason.

I am not going to post it now because I may break down and cry, but when I can laugh about it, I will post it.

Check back in a few days. Here are some fall pics from up at the lake to hold you over until then.

Enjoy!

School pics

Pics

Catching up

I know I have a bit of catching up to do, so here it goes.

1. We have no real answers to Carson's MRI yet. We saw Dr. K - our NS, and he said "no chiari", but he also said that before surgery...... so I don't feel we got any real answers there.
We will be seeing Dr. Frim in Chicago on Nov. 13th.......
Hang on and I'll update on that again in a moment.

2. Still no pennies. I took Keegan in to the doctors office on Monday to have him scanned with a metal detector, but not sure how well that worked. The nurse scanned it over his belly and it did not beep. She scanned it over his crocs and it did beep, but them when she scanned it over something other metal it did not beep..... anyhow, Keegan HEARD " no pennies in there" and that's all he needed to calm down. As for me, as long as he doesn't get sick I guess it's ok too. No more penny diggin'!

3. I got a JOB! Ok, not ones that pays, but it pays in "good feelings". I am now the sponsorship coordinator for a Craniosynostosis and Plagiocephaly support board (CAPPS). My job is to match up mentors with families awaiting their child's surgery. I love it! It's a great way for me to give back. After all, my mentor and I met for the first time in August! I can not wait to meet up with her again!

4. Back to the MRI. On our CAPPS board, once a month they try to get either a NS or CFS to come and chat with the group on line. This past month it was Dr. Schmelzer, a CFS in Utah. He was great. Very helpful to a lot of moms, me included. I asked a few questions about Carson and he became involved with us.
Long story short, we are for a 3rd opinion with Carson.
Dr. S believes that there is more to our puzzle, and was shocked that she already had 2 surgeries. HE contacted another team at Riley Children's hospital in Indianapolis, and we should be hearing if we can get an appointment at the end of Oct. Thank you Dr. S!

OK, So I think I've got everything caught up......
Let me know if I missed something.

20 hours shy of 1 week.....

......no pennies yet.

Chiari Awareness Month

Here's the scoop:

Chiari Malformation Awareness Month 2008

" *Whereas , Chiari Malformations (CMs) are defects in the cerebellum, the part of the brain that controls balance; and,

*Whereas , The condition was first identified by German pathologist, Professor Hans Chiari in the 1890's; and,

*Whereas , The cause of Chiari Malformations are unknown, but scientists believe they are either a congenital condition caused by exposure to harmful substances during fetal development or a genetic condition since CMs may appear in more than one member of a family; and,

*Whereas , Symptoms usually appear during adolescence or early adulthood and can include severe head and neck pain, vertigo, muscle weakness, balance problems, blurred or double vision, difficulty swallowing, and sleep apnea ; and,

*Whereas , The National Institute of Neurological Disorders and Stroke of the National Institutes of Health is conducting research to find alternative surgical options and to identify the cause of CMs to create improved treatment and prevention plans; and now therefore be it,

*Resolved , That I, Jennifer M. Granholm, Governor of the State of Michigan, do hereby proclaim September 2008 as Chiari Malformation Awareness Month in Michigan, and I encourage all citizens to learn more about this disease and to recognize the importance of finding a cure. "

So here is my plan, because I don't live in Michigan, but in Wisconsin (close enough) and because it is no longer September, but October (again, close enough) I would like to declare;

October 2008, Chiari Awareness Month on my blog!!! Riley and I would like to sell 25 bracelets to help find a cure for CM. Our NS is doing research and we would like to help! Please help our cause.

Handmade bracelets by Riley and family. $5.00 each. If you would care to purchase one, please click the button on my side bar (please choose either child, teen or adult)

You can also go here to read our story www.caringbridge.org/visit/rileycole

THANK YOU! Hopefully this will be a BIG success! I will keep a tally on my blog on how many we sell.

53 hours......

NOTHING. Not even having BM's!

UUGGGHHHHH!

Tomorrow I will take Carson down to Milwaukee for a post op MRI and then see the NS on Friday morning. Hopefully we will get some answers to whats going on with the ICP (intercranial pressure) and her Chiari.

Wish us luck (and my mom who will be on BM patrol since I will be gone with Carson over night.)

40 hours......no pennies

GOOD GRIEF!!!!!!

30 hours and counting

30 hours and NO sign of 2 pennies!!!

18 hours until I PANIC!

$700 Billion has nothing on us. I'm worried about 2 cents.

Today, my mom and I took all 4 kids to the geneticist. Long story short, it's looking like Carson has something called Saethre-Chotzen syndrome. She had a few key factor which the doctor was looking for. We will wait to see the final results before we have the other kids tested.

On to other funny (or not) topics.

After we got home from CHW, Keegan was laying in my bed and frantically came out screaming.
MY 5 YR OLD SWALLOWED 2 PENNIES!!!

Eff $700 billion, I am worried about 2 cents!!
I quickly called the the doctor and she told me if we don't see 2 pennies in 48 hours that we should think about a SURGEON!!!!

Then as my mom and I were laughing (actually crying) my mom looks outside and there is my GOOD shark vacuum sitting in the grass, by the way....it's raining!!!

I now KNOW, I have lost control of myself, my kids, and this house.......(please don't call social services!!)

Things not getting any better

JUst a little update on Carson and Cooper.

Cooper had his test yesterday to see if he also has the bladder reflux. Good news....He doesn't. Bad news.....His pee pee hurts A LOT, and he has a fever......

Carson my dear has been the devil child lately. I can't help wondering if they slipped her somthing while she was under. LOL. Seriously....she hasn't been the same since she went into surgery. She is irritable, aggressive, not eating well, head banging the back of her head....so I talked to the NS and she will be having a MRI next Thursday. Yes, they will have to put her under, but we NEED to find out what is going on in her little head.

Will this saga ever end?

I attended a chat group last night with a plastic surgeon. He was alot of help and was a wealth of information. He actually showed interest in Carson's deal with high ICP, chiari and cranio. just from chit chat, he thought Carson may have a syndromic craniosynostosis. Which is not the best situation..... I have contacted him for more thoughts on treatment for Cars.

He did some training with our team and knows them well.

Here's hoping for some answers.

Monday, My mom and I are taking all 4 kids to a geneticist.
Hopefully we will get more answers there too.

Our walk for CHW!

First of all, THANK you from the bottom of our hearts to all of you that donated!!

We had a GREAT TIME!!!

We raised a total of $1375.00. YAHOO!!!

Here are a few pictures-

2008 Team - Cole's cranio and chiari clan

My childhood girlfriends - our swim team relay

Us and about 20,000 other people

My friend Tracy, and her daughter Ashley, who also has craniosynostosis

2008 Children's CHAMPS

And a little face painting on the side!

Re do of the hair do

Short and Sassy

Last night Riley and I went to get our hair cut. Our girl that we normally see called in sick, so we opted to see someone else........look at this new SASSY CHICA!!! She LOVES it. We went out last night and bought a few different products to try. She could not wait to go to school this morning to go show off her new look! (I will try to get a brighter picture when she gets home)

Oh the places we'll go

Quarry Quest

2008

Cooper driving the crane

Diggin' for gems

The 3 amigos

(Carson spent the morning with nana. No need for sand in the stiches)

Dump truck rides!

Coop driving the "digger"

Keegan driving the crane

*****************************************

Lake pictures

Just hanging out in the grass all by myself

Here she comes - Pucker up puppy!

Do

Not

Follow

ME!

Here I come again!


Bump - before surgery

very little bump after surgery.