Sanity

The light at the end of the tunnel is no more.

2011-07-25T19:29:00.000-07:00

Carson had a Urology appointment last Friday and things didn't go as well as planned. It's come to that point to let you all know that Carson is going to be having surgery here in the next month or so.

Carson has been having difficulties with her bladder and bowels. Our urologist (who works hand in hand with our Neurosurgeon ) is 100% sure that it is nerve damage caused by her Chiari Malformation Type 1.

The nerves from her brain to her bladder/bowels are not working correctly and is showing signs of damage.

The 2 procedures that they will be performing during the surgery are called: the MACE procedure (for her bowels) and the Mitrofanoff procedure (for her bladder)

Here is a little info on both procedures.

Bladder:
Mitrofanoff appendicovesicostomy, also known as the Mitrofanoff procedure, is a surgical procedure in which the appendix is used to create a conduit between the skin surface and the urinary bladder.

In the procedure, the surgeon separates the appendix from its attachment to the cecum, while maintaining its blood supply. Then he creates an opening at its blind end and washes it. One end is connected by surgical sutures to the urinary bladder and the other is connected to the skin to form a stoma. Generally, an incision is made into the umbilicus so that it may serve as the canal for the catheter.

Urine is typically drained several times a day by use of a catheter inserted into the Mitrofanoff canal. The Mitrofanoff procedure allows the individual to self-catheterise so that he or she is not dependent on a family member or a medical professional to catheterize him or her.

The Mitrofanoff procedure has been found to improve the life of people with spinal cord injuries, by increasing their independence.

Bowel:
A Malone antegrade continence enema, also known as Malone procedure and by the abbreviation MACE, is a surgical procedure used to create a continent pathway proximal to the anus that facilitates fecal evacuation using enemas.

The operation involves connecting the appendix to the abdominal wall and fashioning a valve mechanism that allows catheterization of the appendix, but avoids leakage of stool through it. If the appendix was previously removed or is unusable, a neoappendix can be created with a cecal flap.

The surgery will take anywhere from 4 - 6 hours. Her hospital stay will be anywhere from 5 - 7 day and recovery is just about 6 weeks.

I have a feeling this will be a hardest surgery yet. As Carson gets older she will learn how the cath both stomas and become very independent but in the mean time, Matt and I will have our work cut out for us.

Thanks everyone for all your thoughts and prayers.

Is it HOT enough for you Wisconsin?

2011-07-20T07:35:00.000-07:00

Holy Smokes....I can not believe how HOT it has been here in Northeast Wisconsin the last few days. Temps up into the high 90's with the heat index reaching 105 - 110. Did I mention that is with 100% humidity? It is so hot, that going to the pool isn't even enjoyable unless you are in the water up to your nose. It's crazy, and many Wisconsinites are NOT use to it. It could go away any day now!

I guess I shouldn't complain. 6 months from now, Wisconsin will most likely hit it's all time cold temps of the year at around -20 below WITHOUT the windshield factor.

So I guess the kids and I will get a good movie (or a book) and hunker down for the day until it cools off.

Happy sweating my friends!

Spring Break 2011

2011-04-03T12:35:00.000-07:00

Mt. Olympus, Wisconsin Dells

The kids had a great time, but the big water slides were way to much for my little guys to handle. They had a great time playing in the little kid area with Kenzie.

I think everyone is ready to head back to school tomorrow!!

Life

2011-03-24T08:31:00.000-07:00

Oh gosh, I have been away for so long I can't even remember how to blog. As I was sitting here trying to figure out how to title this post, nothing was coming to mind. I have been away for so long, that I had even forgotten my login and password combo. How crazy is that?

Most of you that follow me here also follow on Facebook so you aren't totally out of the loop with my life. For you that don't follow on FB, so much has gone on that I can't even imagine trying to figure out how to catch you up, so I will have to make a very long story short.

As you know I have kiddos with medical conditions. Since December, Keegan and Carson have been my struggles. Keegan with his Chiari Malformation and Carson with her Chiari and neurogenic bladder.

Keegan has been struggling with big time leg pain since July 2010. In September of '10, our NS placed Keegan in a hard cervical collar to see if we could figure out his pain. He has been in and out of the cervical collar since September. It is now March and we are still playing with his symptoms. When Keegan is in the collar, his leg pains go away, when he is out of it for sometime, the leg pains come back. Again, it has been like this since September, but our team can't figure it out. He has symptoms of cranial instability, but his scans look OK. So it has been a big mystery.

As our last NS appointment, Dr. I was almost certain Keegan will need a craniocervical fusion. They would use rib graft and fuse the skull, c1, c2, and c3.

I am not sure when this will happen. Because there is no concrete diagnosis of cranial instability, we need to make sure 100 % that the fusion will help Keegan. So at this point, only time with tell.

Little Miss Carson! Oh, its been a wild ride with Carson. In the month of February alone, we were admitted to the hospital on 3 different occasions.

This poor little girl has been complaining of stomachs since the end of November and no one can figure it out. We know that she has a tendency to became constipated fairly quickly. During one of our Urology appointments, we were advised to see GI at Children's. We got in with GI, and Carson stumped them as well. We have done numerous clean outs, we were even admitted to the hospital to have a clean out done there. They placed an NG tube in and she was hooked up to Golytely. This girl went through 4 - 4 litter containers of fluid before she was all cleaned out. It was insane! She also has had an upper GI and an upper scope done. Still, nothing was found.

We went back to our Urologist for an appointment a few weeks ago and told him about the issues Carson is having. Because Carson has neurogenic bladder and now bowels we were advised to stop treatment with the GI team and instead be treated solely by Urology.

At this point in time we are doing cone enemas. It seems to be working fairly well, and so far no complaints from the patient. It is, however looking like she will have to have a procedure called the MACE procedure done:

(A cecostomy or MACE (Malone Antegrade Colonic Enema) surgical procedure is performed when other therapy techniques have not helped severe constipation or fecal incontinence, the loss of bowel control. These procedures are usually only performed after other techniques to manage constipation or fecal incontinence have proven unsuccessful. This procedure gives the child, or caregiver, the ability to completely empty the colon by giving him or herself an enema through a small opening in the side of the abdomen.

MACE Procedure

The MACE procedure is similar to the cecostomy in that a small portal is made at the beginning of the large intestine. Instead of using a catheter as the passageway for the enema to flow through, the MACE procedure uses the appendix. The appendix is brought to the surface of the skin where a small opening, or stoma, is made)

This is a huge reconstruction procedure that will be permanent. its about a 9 hour surgery and takes 6 - 8 weeks to recover. So. We will see what happens. I have talked to a few parents who's children have Spina bifida who have had this procedure and everyone loves it. I am hoping that we love it as well.

So, that has been my life the last few months, besides all the other daily stuff that goes on with a family of 6.

Sorry for being away so long, but I just didn't have the spare time to write.

So far behind..no time for computer

2010-12-01T21:22:00.000-08:00

Oh, I am so far behind in my blogging. To be honest, I haven't had much time to be on the computer. Its sort of funny, but my 40 minute a day job sort of screw up my day. Crazy, I know. Since I am here, lets recap all that has been going on.

1. My babies turned 5 on Nov 15th.

2. My 7 yr olds are preparing to receive their First Reconciliation, so we have been studying, memorizing prayers, going to special classes, studying some more......

3. I was diagnosed with being pre diabetic.

4. I am on the school PTA and in charge of the Reflections program; Dec 14th.

5. Working noon supervision at one of Appleton's finest Jr. Highs

6. Found out I will be having bladder surgery on Dec 27th

7. Doing homework with kids.

8. Happy Thanksgiving!

9. Dieting and exercising so I can kick the "pre diabetic" thing to the curb - NO TIME to deal with that!

10. Making hats for all the kids in Carson and Cooper's class

11. Mentoring a mom who's daughter has craniosynostosis and will be having surgery on Dec 30th.

12. Dealing with sick kids

13. Christmas shopping

14. Trying to help Riley through a slump.

OK, So you get the picture......

Calgon, take me away!!!!

A hard week

2010-11-08T04:43:00.000-08:00

Its been a hard week in the Cole house. This past Thursday, Riley and Keegan's teacher passed away from surgery complications. She had been fighting cancer for a few years and was scheduled for a hysterectomy. She came through surgery fine, but then had a brain aneurysm and passed away unexpectedly. I went to school with the kids on Friday, and oh what a sad place school was. I was totally amazed at all the support that was around for the kids and staff. I am so thankful for being in such a fantastic school district!!
Thank you for being such a fantstic Teacher, and a wonderful woman!

Rest in peace Andera Oppelt!

Riley and Keegan miss you!!

After 8 years...

2010-10-21T08:42:00.000-07:00

I am employed again!! I am not sure how I really feel about it, but its 1 hour a day working at one of the Middle schools in town. If anything, its a foot in the door for the future. That's a good start, right?

I know I promised to blog at least twice a week, and I am still trying to do that, but I started another blog that is private to chat about my life since I have been reunited with my birth family. I needed a place to vent with only a few of my closest friends. Its been great to get stuff off my chest without the "judgement".
Everyone hears about the biological family, but nobody ever hears how hard it is being the adoptee. I needed a place to call my own, and now I have one.

I know

2010-10-03T07:20:00.000-07:00

Again, I know I start my entries with..." I know its been awhile since I have blogged", but gees, Its about time that I blogged!

I used to use my blog time as ME time, and for some funny reason my ME time has been slipping away from me, and I miss it. I have lost all focus of finding ME, and it has all turned to my hubby and the kids.

I hate inside who I have become, the wife, the mother, the person... I hate it all. I feel like I don't even know who I am anymore, and that scares me.

I am finding myself doing things that I wouldn't normally do.

I am finding that I haven't been in contact with the most of the people who I used to have daily contact with.

I am finding I am not in contact with the people I love most....

I HATE IT!

I need to turn my life clock back about 6 months and start over again.

As many of you know I have been in contact with my biological family. Most parts are great and some things are not so good. It was consuming my life for most of the summer and I think that is when I truly started slipping away from myself. I used to like who I was, the mother that I was, the wife I was, and now.... eh!.

Maybe if I start with baby steps...like getting my ME timeback, I will begin to "like" me again.

So, blogging world... I am back.

I vow to post at least twice a week!!

Lets see where this takes me!!

Anyone willing to help?

LOST A.....

2010-08-26T09:43:00.000-07:00

Do you ever feel like you life is slipping away from you so fast that you have no idea which way to turn first?Have you ever felt like you've lost your best friend or that you are stuck in the middle of a corn field and cant find your way out?Ever feel like all the people who are important in your life are no longer just an arms reach away?Or that your scale is playing a nasty trick on you but you know deep down you need to do something about it?Ever feel like you are about to bungie jump and instead of stopping,you keep flying up and down?

I do.

Trip

2010-08-06T04:34:00.001-07:00

Let me first start out by saying....It is so good to be home! What is it about vacations? Why are we always so excited to leave, but we are always more excited to be home afterwards?

Ummm.

My parents, the kids, and I drove out to New Jersey in July to see my mom's family. My gram is in a nursing home and is not very excited to be there, but let me tell you, her face lit up when she saw my kiddos. She was so proud to have her great grandchildren there with her! It was a beautiful thing!!

On top of visiting with family, we did a few fun things as well! My highlight from this trip was being able to get to a New York Yankee game! It was fantastic to say the least!!

It was HOT!

My "main" guy ~ Jorge Posada! If you guys dont know this man, you need too! He is not just a fantastic player, but a fantastic human being! Jorge and Laura also have a child with Craniosynostosis . Jorge jr. has been through 10 different surgeries to correct his skull.

10 yrs ago, Jorge and Laura Posada started the Jorge Posada Foundation to help support families who had been touched with craniosynostosis. Last year Carson and Cooper were invited to the Jorge Posada foundation Gala in New York City and and we had blast. We chatted with Jorge, Laura, and many other families who has been touched with this condition. It was a very nice evening. Something I will always remember.

Derek (clap, clap, clap), Jetter (clap, clap,clap)

A -Rod hit 599 while we were out in NY, but decided to wait a bit longer on 600!

Congrats Alex!

For you that may not know, Alex started his career right here in my home town with the Appleton Foxes!

We took the kids (Joe too) to the Statue of Liberty

And it was HOT!

We took them to the Empire State Building

We walked around NYC - you just never know who you will meet on the street!

And we had a bit a play time too! Did I mention it was HOT?

We had a fantastic time and we can wait to get back out there again soon!

Away

2010-07-27T05:56:00.000-07:00

Oh, I have so much to blog about and so little time right now! The kids and I are away in New Jersey with my parents visiting my granny in the nursing home.

We've left my poor hubby at home to fend off all the dangerous storms that have come through our home town. What a mess that has been!! Matt, we miss you!!

Anyhow.... I cant wait to get home to blog about our journey out East. Its been a fantastic trip!

See you when I get home!

"Adopting one child will not change the world, but for that one child, the world will change"

2010-06-21T07:38:00.000-07:00

Congrats to my friend Michelle and her husband, Brian!! They have now officially ADOPTED Lilya!! We can not wait to meet her!! Safe travels my friend!!
http://ahomeforlily.blogspot.com/2010/06/few-more-pics-from-adoption-day.html

Life lately

2010-06-21T06:51:00.001-07:00

A little taste of our life lately.....

The Lake

New Family

Devil's Lake

Wisconsin Dells

Donald Driver Softball game

Happy Father's Day

2010-06-20T16:41:00.000-07:00

Happy Father's Day!!

We had a great time at the local pool this afternoon and then a fantastic steak dinner from the grill!!

Thanks Daddy for all that you do!!

We LOVE you!!

Lifephoto.com review and FREE giveaway

2010-06-08T12:39:00.000-07:00

A few of my favorite things........

A few weeks ago I decided that I was in need of a new day planner. I wasn't looking for just any day planner, but one that I could design all on my own. I wanted to add my own personal dates, my own personal pictures, and I wanted the option to add my own comments, borders, backgrounds, and such. After a little bit of searching I found Lifephoto.com. It is a fantastic site which is surprisingly very easy to use. I was able to browse through a bunch of different items and I finally found the Day Planner items.

There are 2 sizes to choose from - (mini) 4.4 x 6 or 8 x 11. You may also add the number of picture pages you would like.

I chose the 8 x 11 with 54 picture pages.

After I had selected my item and size, I was able to uploaded pictures very easily by taking the pictures I have saved on my computer and uploading them to the day planner site. I was also able to arrange them as I wanted which was a huge bonus for me because I wanted certain pictures on certain weeks of the year.

I was able to add my own birth dates, special appointments, things I needed to remember to do.

I was able to make my pictures full paged, or if I wanted portrait style, and add words, I could have it that way too.

I have to say I was extremely happy with the whole process of making this planner! I could not believe how easy it was!! Thanks Lifephoto.com for a fantastic product!!

Now, the exciting part!! Want to WIN your own personalized DAY PLANNER from Lifephoto?

Go to Simplephotogifts.com and sign up to follow Tish's blog (blog for Lifephoto) via e-mail notification or by RSS feed. Tish will be selecting the winner!!

The link to sign up is in the upper right hand side of my blog. Dont miss out on this great giveaway!

This would make a fantastic gift, or if you are a busy mother like I am, you can use it for yourself!!

Good luck and have fun!!

Measurement Monday

2010-05-24T04:11:00.000-07:00

Good Monday Morning! I have so much exciting news to share! First, my weigh in...

Last week I hit a wall and lost practically nothing. I was hoping that this week wasnt going to be the same.

This weeks loss - 4 lbs

Total loss: 16 lbs and another 2 inches from my waist! WAHOO!

This coming week is going to be a bit harder, because I have of alot going on! I guess I can only do the best that I can!

The other exciting news - I have been reconnected with my birth mother! Its been an overwhelming situation, but none the less, FUN!

I have an uncle who had been activly searching for me, and an aunt who has been my uncles biggest cheerleader and many other family memebers who remember me. My mother is the oldest of 3 girls and she has 2 - 1/2 brothers. I also found out that I have a 1/2 sister!! I have always wanted a sister!! She is 29 and married.

This coming weekend will be the moment of truth! I will be getting to meet my birth mother, her father, and a bunch of other "new' family members! I am so excited and I just cant wait!!

Stay tuned....I will post as things progress!

Measurement Monday

2010-05-17T08:09:00.000-07:00

Well folks, we've all watch Biggest Loser, and we all know what happens by the 2nd and or 3rd week, RIGHT? You hit a BRICK wall! Week 3 was my wall.

Weight loss: .03 lbs

I also lost another 1/2 inch off my waist. So even though it was a tough weight loss week, I am happy that another 1/2 inch is gone!

No news on the adoption front yet this week. Hoping for good news!

Adoption info

2010-05-11T13:26:00.000-07:00

Today I was told that there is legal paternity established. My Social worker found my birth father and left him a voice mail. He has to agree to a reunion before I can get my birth mothers info. IF he says "NO", I wont be able to have any contact with my birth Mother, but will still get the updated family history. If he says YES, there is a possiblity that I will get to meet BOTH of my biological parents! It may be another couple weeks (if it goes my way) before I have any contact with them.

Also found out that when (or IF) the social worker gets a hold of my birth father she will give him the OPTION - If he doesnt want anything to do with me, he can say "NO", but if he agrees to my birth mother and I meeting- he can agree to that too. So, NO on his part, can also mean YES for my birth mom and I. Does that make any sense? I also found ... See Moreout something interesting...HE requested 2 paternity test. He did NOT want to believe he was my birth father so they went to court twice for paternity. Im hoping he doesnt still have a "sour" taste in his mouth over my birth mother getting pregnant!!

AND, the social worker mentioned to my birth mom that we have 2 sets of twins....Maybe that moved her? Maybe it will touch my birth father???

Measurement Monday and more info

2010-05-10T07:08:00.000-07:00

Well, week 2 of being on WW went almost as well as week 1!

Todays weight loss: -5lbs!!

Toal weight lost: 12 lbs!!

Plus, 2 inches gone from my waist!! Not to shabby!!

Birth mom info: My social worker from the state found and contacted my birth Mother last week. She still live in Wisconsin and is "THRILLED" that they found her and "would love to be in touch with me!"
They contacted her on Wed, and the consent form( to share info) was sent out that same day. Now we wait for her to return the consent form which will hopefully be sometime this week!!! I am hoping by Friday, at the latest, that I will have more info about her!!
I will keep you posted!

Measurement Monday!

2010-05-04T07:13:00.001-07:00

Ok, I totally forgot to post yesterday about my loss!

My first week on - 7lbs!! WAHOO!!!

It feels so good to be back on. I just cant believe how much easier it is to do when you are ready to diet and not forcing yourself to do it.

I also have some adoption info -

INFO: MOTHER - oldest of 3 siblings, 16 yrs old, finished 10th grade, parents divorced and remarried, 5'7 / 160 lbs. FATHER: oldest of 2 sons, 18/19 yrs old, HS graduate, blond hair, blue eyes, 5'9 / 180 stocky build.

I will post more when I have it!

Measurement Monday's

2010-05-01T15:07:00.000-07:00

Hey everyone~

After battling another surgery this past March, I decided that it is FINALLY time for me to take a step back and work on "me". So, I have hit the weight loss road AGAIN with my old and dear friend, Becky.

I started back on my Weight watchers and this week has been fantastic. I cant believe how easy it was this time to get started. I guess when you know you are ready, YOU'RE READY!

So, besides being honest with Becky every Monday (and every other week day that ends in "Y") I've decided to share my progress with you all. I think the more people that ride my tail, the better I will do.

So, watch for an update this coming Monday morning, and everyone after that.

Happy weight loss!

Keegan

2010-04-25T09:00:00.000-07:00

Here is the video of Keegan's Chiari surgery.

http://www.onetruemedia.com/shared?p=ad025c614b437b83ae0dc3&skin_id=701&utm_source=otm&utm_medium=text_url

Happy Birthday to me!!

2010-04-17T09:09:00.000-07:00

Is no news GOOD news? Humm

2010-04-16T06:50:00.000-07:00

I am still waiting on the results of Keegan's holter monitor. It's been almost a week and a half since he had it removed. I guess I should just go with "No news is Good news", or until I hear otherwise.

Other news....

I sent in my adoption papers to the State of Wisconsin on Monday. I am in the midst of finding my biological parents. There has got to be some connection between me, my biological family, Craniosynostosis and Chiari Malformation. I have my "questions" about Matts grandma (on his dad's side) and her passing of MS, but I am just hoping it will be much more clear cut on my side.

So, as I get news, I will share it with you all. It's very exciting, but nervewracking at the same time. I just hope I am not to late - meaning I hope that she is still alive and in good health.

When I was born, in '74, she was 16 yrs old - so if my math is right, she should only be 49 or 50 yrs old. Kind of funny.... she was only 34 yrs old when I graduated high school. I could NOT imagine having a child 2 yrs into college already at 36. WOW!

I know that my mom tried hard to keep me. I did a lot of flip flopping between her and the foster home. When I was born, she kept me for 1 yr. At that point, her monther (my bio gram) would not help her out anymore, so she placed me up for adoption. Serveral months later, she returned to get me and tried to raise me on her own. Again, she couldnt do it, so she placed me back up for adoption. That's when I was adopted by the most wonderful, loving, caring parents out there.

It still haunts me today, to know who I am and where I come from. I am not sure I would of had the nerves to search for my biological family if it weren't for the kids conditions. So, now, the kids come first and I need to get to the bottom of where it came from. If I find out who my parents are in the midst of it all, so be it.

So, If you are out there, and you gave birth to a little girl at St. Agnes hospital in Fond du lac, WI in '74 - Please leave a comment - you just might be my Mother.

Chiari Decompression - Take 3 (pics)

2010-04-06T14:34:00.001-07:00

To be continued.......

Hanging out with a few friends.

2010-04-02T15:16:00.001-07:00

Had a great time hanging out with some friends today at Gordy's farm!! Oh how the kids love to go and play with the cows. I have a lot of good memories growing up around that farm. :)

I'm back - I think

2010-04-01T07:38:00.000-07:00

After a little break, and a major surgery for Keegan, I think I am ready to get back on track with my blog. It's been a nice break, but I have to be honest, that darn Facebook takes up all of my 5 - 10 free minutes I have a day.

Starting today - I will split my time between FB and my blog. :)

I will write my first full entry here, with pictures, next Monday.

Packed

2010-03-17T20:24:00.000-07:00

Packed and ready to go. Hurdle # 1 - Leaving Riley at school tomorrow!!

Just an FYI ~ I will not be posting surgery updates here on my blog. If you care to follow along, please go to:
www.caringbridge.org/visit/keegancole

Thanks!

Happy St Patrick's Day!

2010-03-17T06:40:00.000-07:00

Keegan's surgery is in 48 hours!!! So much to do yet before we leave in 24 hours!!

T minus 2 weeks!

2010-03-07T15:07:00.000-08:00

Time is going by so fast, yet so slow! It is now just under 2 weeks until Keegan's surgery. Most of us are freaking out, but I have to admit, Keegan has really done an outstanding job of keeping it together. I also think that the unknown is probably saving him.

Riley on the other had is a mess. She is not handling this well at all. She has been getting in trouble at in class at school, which NEVER happens, she is moody, pushy, crabby.... I don't know what to do for this poor girl other than giving her lovin'. Last Wednesday, after school she had a full blow meltdown. Tears and all. She told me she DOES NOT want him to have this surgery. That she is sad for him. I believe part is because she knows what he is going to be going through for the next couple of weeks/months, and the other part is because - their twins. There is something about a twin bond.

So, Riley and I had a chat about how she can be expressing her anger/fear besides - pushing him, hitting him, stepping on the back of his shoes, and screaming at him. We will see how this next week turns out.

This Friday, Lincoln is holding a benefit for Keegan. They are having a dinner and mnight, along with a silent auction and a "cake walk". It should be a lot of fun. I know Keegan is looking forward to it!

So, that s about all that is going on right now. We are just trying to make it through.

Remember, to follow Keegan's surgery/recovery, you can go to - www.caringbridge.org/visit/keegancole

Thanks!

Lisa and Tom's wedding

2010-02-07T14:19:00.001-08:00

Congrats Lisa and Tom!!

I was so in "LOVE" with this beautiful cake. Who wouldn't be. It was layered, white cake on the top, cheesecake on the bottom!! SOOOO Yummy!

A little time to relax and let loose....

2010-02-06T15:20:00.001-08:00

We had a fantastic time with our friend, Aubrey, today! The kids got to let loose and have fun!!!

We first met Aubrey last year through The Littlest Heroes Project and ever since we've been

addicted!!

Thanks Aubrey for all you hard work and wonderful talents!

Notice Riley on this wall ?!?!?

I love this saying!

Caught Aubrey in ACTION!!

Surgery

2010-02-01T15:01:00.000-08:00

Hi!

Just wanted to post a quick note that Keegan will be having his chiari decompression surgery in mid to late March. So far we have a questionable date - March 19Th. I should know more at the end of this week.

Also, I borrowed this from a friend:

Spare time?

2010-01-25T11:49:00.000-08:00

So, what does a mom with a ton of spare time do with her time??? Well, she makes hats of course. My sewing machine and I have been best friends lately. We've make pink ones, and stripes, and Packers, and cupcakes, and hearts, and butterflies, and footballs, and basketballs,and oh so much more. And..they have been selling like hotcakes. Yes, I said selling! I've made at least 50 hats since Christmas and I am not sure when I will stop.

I had been making hats for friends kiddos, and friends, and even all the kids in Riley and Keegan class, and even the teachers kids. Until, one of the mom's from Riley and Keegan's class LOVED her daughters hat so much that she wanted to BUY a few. So, I made a few for her and sold them for 5.00 each. Then she took some to the school where she works and everyone one was eating them up. Who knew it would become a tiny business.
Now, my spare time is not so much!!

If you to are interested, leave me a note in the comment section and we will see what we can do!!

PLEASE make sure to read the post below!!!

A family in desperate need

2010-01-16T18:24:00.000-08:00

I want to introduce to you my little friend Katie, and her mom, Laurie. Katie is a a dear sweet little girl with Chiari Malformation. Katie has had 2 surgeries for her Chiari. Her first surgery was done by a Neurosurgeon and was "botched". Her mom found me via the Internet and I lead her to our NS who did a second surgery and cleaned up the mess from before. We met face to face for the first time while Katie was in the hospital recovering from her 2ND surgery. Katie is doing well at this point, but her mom is struggling big time. Please take a moment to read this article ~ Katie Lanala

Since this article has been published her mother filed divorce from her father. Katie also has a 2 yr old little brother. This family is struggling big time. They live in an apartment now which she can barley afford, they have very little income coming into the home, and they are in need of many items.
Here is a list of items they need:

- cleaning supplies
- pull ups, nuks, 2 yr old supplies....
- shampoo, conditioner, shower stuff...
- laundry detergent, fabric sheets,....
- Gas cards to get back and forth to Madison for Katie's appointments
- grocery store gift cards........
- jammies, socks, and undies for the kids...

if you have a place in your heart for this family like I do, please donate. Every single penny will help this family survive day to day life.
I have started a pay pal account for Laurie and the kiddos. Please see the upper left hand corner of my blog.

I will post every now and then on the status of this family and Katie's recovery.

Thank you so much.

It's got to get out there

2010-01-15T18:06:00.000-08:00

It's been a few days since I've blogged. I have been struggling with where I want this blog to go. I feel it needs a change, for my readers and for me. Where though, is the big question. Do I want to keep it as a "trail mix" type of blog? Or should I keep it as a "medical" type, or just strictly "family"/chiari malformation/craniosynostosis ~ and that's what I have decided to do. So, I guess it's not much of a change after all.

Over the last few weeks there has been a lot of change within the the cranio world out there. My good friend Amy Galm is the president of Capps kids. She has done a lot of work restructuring the site - http://www.craniocuties.com/, getting more families stories, finding out which neurosurgeons and plastic surgeons are the best, and spreading awareness. It is true amazing with what she had done for this community.

As many of you know, she is also trying to get an awareness walk set up for next fall in either New York City, or on Long Island. I am so excited about it all. If you feel the need to donate to the walk cause, there is a link on the upper left had side on my blog. Every single penny counts!!

We've been passing out awareness cards to the pediatricians offices to help spread the awareness. If the peds aren't up to speed, who else is going to help these poor children?

I know for us, it was our county health nurse who diagnosed both children. She would come to the house to weight and measure Carson and Cooper so I didn't have to take the to the office during peek RSV season.

Amy has also been busy designing window decals, bracelets
and calendars to get the word out.

It is truly amazing!

So while all of this NEW and up and coming exciting stuff is going on, I feel the need to keep blogging about the kids conditions to help spread awareness.

Please go and check out the look of the new site ~ http://www.craniocuties.com/

And if you "think" that a child you know has either craniosynostosis or plagiocephaly, please speak up and direct them to this link.

A change in plans

2010-01-06T07:01:00.001-08:00

THANK YOU to everyone who sent prayers to our little friend Kaitlyn and her parents!

Monday morning, at the appointment with the neurosurgeon, the plans to do surgery changed. The NSG felt that maybe he was jumping the gun with surgery and took a few steps back. After explaining the options and the outcome with Jenni and Kirk, he left the ball in their court to decide if surgery is the best thing at this point in time. They decided not to do surgery, but to watch her extremely close, and if there is any slight change they would re visit the surgery option again.

So, in many ways your prayers helped this surgeon, Jenni, and Kirk make the right decisions for Kaitlyn at this time!!

Thank you!

Please join us in prayer

2010-01-02T21:38:00.001-08:00

I hate to say it, but I need your help again.

See this beautiful little girl? She is the daughter of my friends, Jenni and Kirk.

On Tuesday, Kaitlyn will be headed into surgery for a chiari decompression surgery. Not only will she be having a chiari decompression, but she also has tethered cord.

She will undergo 2 different surgeries at once.

Please keep Kaitlyn, Jenni and Kirk, and our neurosurgeon in your prayers over the next few days.

Thank you!

HAPPY NEW YEAR!

2010-01-02T13:44:00.001-08:00

Happy 2010!!

We brought in the new year with good friends, family, and a whole lot of sledding out at the lake!!!

Heidi, Sam, Riley, Keegan, and Coop

Me and my sledding partner

Well, not so much!

Keegan, Sam, and Riley

Cooper

Carson

Jake warming up by the fire

Merry Christmas!

2009-12-25T19:29:00.000-08:00

From our family to yours, we hope you have a Happy Holiday season!

Your many reasons

2009-12-21T12:57:00.000-08:00

Here is a video my friend Amy is working on for CAPPS. If you need a reason why to donate, here are just a few!!

Keep your eyes open for Carson and Coopers pics!

To hear the music, go to the bottom of my blog page and pause the Christmas music.

Photo and video editing at www.OneTrueMedia.com

We've got spirit Yes we do, we've got spirit how about YOU?

2009-12-18T06:59:00.001-08:00

We've got more, we've got more......

Nothing like decorating Christmas cookies with 4 YA-HOO's!

Please help us!!

2009-12-10T08:04:00.000-08:00

Dear friends:

Many of you that we have had our fair share of hard times (medically) in the last 4 years. Carson and Cooper (and recently Keegan) struggling with Sagittal and Metopic Craniosynostosis:

(The sagittal suture runs from a spot at the front of the head to the back of the skulI. Fusion of the suture results in a long, narrow skull with or without bulging of both the front and back of the head. Surgery of sagittal craniosynostosis involves removing the suture and widening the skull by opening up the coronal and lambdoid sutures on both sides of the head. Sometimes bone grafts are placed to keep the out-fractured bones apart. Metopic The metopic suture begins at the nose and continues superiorly to meet the sagittal suture. Metopic craniosynostosis results in a narrow, triangular forehead with pinching of the temples laterally. Treatment involves releasing the suture and expanding and rounding out the upper face, forehead and skull)

and Carson, Keegan, and Riley with Chiari Malformation:

(This malformation occurs during fetal development and is characterized by downward displacement by more than four millimeters, of the cerebellar tonsils beneath the foramen magnum into the cervical spinal canal. This displacement may block the normal pulsations of CSF between the spinal canal and the intracranial space. This form of Chiari malformation may be associated with syringomyelia/hydromyelia. It is diagnosed more commonly in adolescents or adults.)

All in all, we have been through 13 surgeries in the last 4 years. That is way to many for anyone to have to go through.

As many of you may not know, there is NO CURE for either condition. I know for a fact, that there is slim to no fed money going towards Chiari research. As for Craniosynostosis (premature fusion of the skull bones), It is up to each and every cranio family to help spread awareness!!

To do this, I need YOUR help! My dear friend, Amy, President of cappskids.org, is trying to get an awareness walk planned for the fall of 2010 in NY. To do so, we need 100 people to raise at least $100.00 each! Just to get the walk off the ground.

Please, we are in the season for giving right now. If you could donate at least $1.00, that would get us closer to having our walk for Craniosynostosis Awareness

To donate, please click the LINK in the upper left hand corner of my side bar that say Craniosynostosis Donations HERE

Our family, and so many of our Cranio friends, THANK YOU from the bottom of our hearts!

*If you donate, please leave me a comment, you don't have to mention the amount, just your name.

Many of you may not also know, but I am the sponsor coordinator for CAPPSKIDS. I help match families going through surgery with families that have already been through surgery with a child. It's sort of a mentoring program.

Snow Storm Allison - December 8 & 9, 2009

2009-12-10T07:12:00.000-08:00

Thanks for the 14+ inches!!

Christmas is a time for giving, right?

2009-12-08T09:39:00.000-08:00

My friend, Michelle and her beautiful family could use your help!!

Here is their story (Michelle and Brian have 3 beautiful children; Karly, Braden, Ruby (who's twin died before birth and has Down syndrome) and a beautiful Angel daughter, Lydia.)

"New Adventures
Last week, this beautiful little girl started showing up across the Internet, on many DS blogs:

Little Lera was in danger of being institutionalized. Look at that beautiful little face - she deserves a home and a family. It wasn't her choice to be born in a country where she has no value in society.

I just couldn't look away; I worried about her day & night. She had about a week to find a family. I contacted Reece's Rainbow, and told them if they can't find her a family, let me know.

Brian & I had always talked about adopting SOMEDAY - but we had thought we'd adopt a younger girl - SOMEDAY.

A couple days ago, word went around that a family had committed to Lera. I was so relieved - and a little sad that she wouldn't join our family. Then, I was THRILLED to find out Lera will be going home to my friend Tracy's home! Lera's journey will be followed on her new adoption blog!
This experience definitely triggered some interesting conversations between Brian & I ...

We have a house set up for a family of 6. We were prepared to have 4 children, and losing Lydia leaves a permanent empty space in our home.

We know we can never replace Lydia. Her loss will always be with us.

And we're very certain we don't want to have another baby; going through a pregnancy would just be too stressful. Too many reminders of what could go wrong.

And yet, we're missing a daughter, and what would be the best way to honor her memory? By keeping an empty chair at the dinner table, or by bringing home a child who doesn't have a family?

After all the discussions we'd had about little Lera, it suddenly became clear to us that were we to adopt, we'd want an older child - someone between Ruby & Braden in age, a little girl who would otherwise be destined to being sent to an institution and left there with no future. This would keep Ruby our baby, and another little sister for Karly & Braden.

We figured we'd start planning & saving up - and adopt when the time was right.

I told Brian to check out the at-risk girls on the Reece's Rainbow website. There were a few that stood out to us, but one who repeatedly drew our attention.

.
For one thing, she is a twin. She was given up at birth for having Down syndrome, but her twin was taken home. We lost a twin - and this little girl is a twin without a family. We lost Lydia, and found a little girl named Lilya.

Most children are sent from their orphanages to the institution at the age of 5 - Lilya turned 5 in August. It's amazing that she's still available for adoption.

So, we can't sit aside and wait and plan. We have to just jump in and go for it - and bring this little girl home. To our home, and make it her home.

Yes, it's expensive - but what is a life worth? It won't be easy, but the best things rarely are.

This is Lilya - soon to be Lily.

Our daughter Lily. "

So, with all that said, the Zoromski's are having an Auction to help raise money to bring Lily home, Please if you are looking for Christmas gifts, please go and check it out. Every penny will help.

* Auction ~
Our auction to help raise funds for Lily's adoption started today on Lily's blog. It will run until next Tuesday, December 15. Please check it out - and if you could pass the word around, we'd really appreciate it!

We have so many really cool items - something for everyone!

http://ahomeforlily.blogspot.com/

Let the Holiday Season begin!

2009-12-05T11:22:00.000-08:00

Appleton Christmas parade!

Here is Riley(grey sweatshirt, letter M on her back, hat), Papa, and Sam running their little hearts out - 1 mile! They made it! I think the dilly bar at the end gave them a little added motivation!

The rest of the world running with them.

I love the downtown Angels

Appleton is home to Pierce Manufacture ~ Fire trucks

My High school band

Wish I could have gotten a picture of all the leg lamps in the window ~ PRICELESS

Good New, FINALLY

2009-12-01T06:42:00.001-08:00

Yesterday we were in Madison to hear the results of Riley and Carson's MRI's that they had done the week prior. Dr. I had nothing but good things to say.

We still aren't sure why Riley is having the back/ spine pain, but as long as it is nothing big, we can deal with!!

Both girls are on a "as needed" schedule or again in 1 yr!! yeah!!

Now, to put all my focus on Keegan!! We will be back in Madison on Thursday for his EMG.

I'm Here (waving)

2009-11-22T17:47:00.000-08:00

As most of you know my life barely ever stops for a tea break, or even a "pee" break for that matter. I can not believe how the time has flown by. It actually make me really sad that time flies by so fast. Before I know it, my kids will be graduating and off on their own with an agenda to be conquered. Ugh.

So anyways, I'm sure many of you are asking, "where have you been?" This is where I've been.....

~Last weekend, Carson and Cooper turned 4 yrs old (see what I mean about the time flying by?)

~Last Tuesday, Our friend Katie had her chiari surgery and I am happy to announce that she is home and doing well.

~Last Wednesday, Keegan and I were in Madison. He had an LP done with his neurologist. He did really well. We got home around 8:30pm

~ Last Thursday, My self, my mom, Riley, and Carson ,headed down to Madison at 4:30 am for Carson MRI and bladder/kidney ultra sound at 830a. Then we sat around and waited for Riley's MRI at 1:30p. We 4 girls lived in a post op waiting room which was probably like 10X10 for a total of 11 hours that day. Mean while, at 10am I got a call from Matt that Keegan is struggling with head pain and need to be picked up from school. Great. I made my phone call to the neurologist and she explains to me that he probably is having a spinal headache from a CSF leak. He is to lay completely flat for 48 hours and pump the fluids.

~ Last Friday, Neither child goes to school and I am home with all 4. 3 that are over tired and 1 that is not supposed to be lifting his head up at all. RIGHT! Come evening time the pain is so bad, I call the "on call" nurse and she insists that I take him to the ER immediately. He and I packed up, I SO broke the law by letting him lay on the floor of the van Vs his eyes popping out of his head by sitting in his car seat but shhh, don't tell. We get to the ER, they get him in right away, we explain everything, they get an IV started with some fluids, good pain meds, and caffeine. We were there for about 3 hours and then they told us he "should" be better by the morning.

~ Saturday morning arrives and he is NOT doing any better. This time I call his neurologist in Madison in hopes they will do something more for him. They send us back to the ER, the ER doc and the neurologist speak, and we are admitted, hooked up to an IV, and laying flat. Life is good while laying flat, but once he is up, the pain is back. We were told that with the IV we would be there at least until Monday. Swell.

~ Today, IV meds aren't doing it. They asked if we wanted to be at home laying flat or in the hospital laying flat until Wednesday. Keegan I both voted to go home. Now, we will lay flat until Wednesday and hope to god that things get better. If not, Wednesday we will contact the neurologist and we will go from there.

So.....that is where I've been. How about you???

Prayers and Birthday wishes

2009-11-16T17:49:00.000-08:00

Happy Birthday to my babes who just turned 4 on Sunday!! I can not believe how the time is flying by!!

HAPPY BIRTHDAY kiddos!

Also, please keep our friend, Katie, and her neurosurgeon, Dr. I, in your prayers. Tomorrow, Katie will undergo her chiari decompression surgery at 12:30pm.
Here is to a successful surgery and to a quick recovery! See you on Wednesday and Thursday!

We know you are in good hands!!!

More Fall, Please

2009-11-08T14:28:00.001-08:00

10 day count down....

2009-11-05T18:01:00.000-08:00

Oh, 10 days for now my little guy are going to be 4!!

HOLY SMOKES!

Please join me as I take a glance over the last 4 years. (Sniff, sniff)

Cooper, twin A, born at 4:59pm

weighing in at 3 lbs 13 oz 16 in. long

Carson, twin B, born at 5:00pm

Weighing in at 4 lbs .4 oz 16 in long

Cooper "tanning"

LOVE this picture of Carson tanning

Happy Halloween

2009-10-31T17:46:00.000-07:00

From:

Bumble Bee, the cheerleader, the urban diva, and The Thing ( Fantastic Four)Oh.... and Jake, too!

Pictures with Katie

2009-10-29T13:13:00.001-07:00

Thanks for playing with us, Katie!

Comment

2009-10-29T08:14:00.000-07:00

To the reader who left this comment:

"I have a child that has gone through a Chiari Decompression, fuse of c1 & c2, scoliosis correction and still has a remaining syrinx in the spinal cord. In reading what I could on the swine flu vaccine & GBS (, I don't know that his body could recover from more slowing of the cerebral fluid - which is what I read was a reallity with GBS(Guillain-Barre Syndrome). His syrinx is still there today (10/09)according to the presurgery MRI's before his scolliosis surgery in March 2008, and the original chiari correction was done in spring 2006. The chiari has significantly gone down but some sections on the spinal chord are still the same size. Anyway, my question / thought is that I shouldn't get the vaccine for him. I just don't know if his funky cfs flow due to the syrinx could handle any more sluggishness from a flu vaccine. Opinions would be appreciated. I am a new widow and trying to do this on my own. Thank you in advance".

Would you email me at ladybug_wi@yahoo.com and we can chat!

Thanks!

A day with a friend..

2009-10-27T11:45:00.000-07:00

...the sun

Update

2009-10-27T07:19:00.000-07:00

Since Keegan was "down for the count" with the flu last week, we had to cancel his LP and EMG in Madison.
We heard yesterday that they have both been rescheduled. His LP will be on November 18th (Riley and Carson's MRI is on the 19th) and his EMG is scheduled for Dec. 3rd.

Praying for answers.......

Also, you may have noticed my new ticker to the left. Our friend, Katie, will be having her chiari decompression surgery on November 17th with our same team. Please keep her, and the surgeon, in your prayers.

H1N1 vaccine

2009-10-20T11:08:00.000-07:00

H1N1 Swine Flu Vaccine Insert Admits It Causes Guillain-Barre Syndrome, Vasculitis, Paralysis, Anaphylactic Shock And Death

The package insert for the Influenza A (H1N1) 2009 Monovalent Vaccine manufactured by Novartis has been leaked on the Internet. According to that package insert, the vaccine (based on an earlier vaccine product known as Fluvirin) is known to cause a whole host of very nasty side effects such as guillain-barre syndrome, vasculitis, anaphylactic shock and even death.
Of course anyone who has been studying vaccine side effects already knows that it causes all of these things, but the story here is that the insert for the swine flu vaccine itself is admitting all of these things. The insert says that it was updated during September 2009, so it reflects the very latest information.

You can read the package insert for this vaccine for yourself right here.....

http://www.fluscam.com/Vaccine_Package_Inserts_files/Novartis_A-H1N1_2009_Monvalent_VaccinePackageInsert_BasedOn1980Approvalfor%20Fluvirin_UCM182242.pdf

Recent life

2009-10-20T06:59:00.000-07:00

Do not take this path.....

....or you will find this

Got H1N1?

(Unofficially Dx by the nurse on the phone)

But not these 2!

Love Fall? You have got to go check out my girlfriend Molly's Blog
Pictures to DIE for!

Help spread awareness

2009-10-15T08:40:00.001-07:00

Here is an obit of a woman who just died of chiari malformation and other conditions that go hand in hand with it. We need to find a CURE for this condition, and spread awareness!

http://www.legacy.com/obituaries/deseretnews/obituary.aspx?n=kelly-morrill&pid=134320970

Baby

2009-10-15T08:27:00.000-07:00

Meet Mackenzie Rayne Zepka

Surgery NOT on her agenda!

2009-10-14T07:08:00.000-07:00

Last week ended on a sour note in our house. My sweet little girl, Riley, has been fighting with medical issues ever since she was dx with chiari malformation in 2003. Well, I think last Thursday took the cake for her. Not only physically, but mentally and emotionally as well.

Last Thursday, Riley, had an accident at school at the lunch hour recess, but she was so embarrassed that she didn't really tell anyone how serious it was. She was playing on the monkey bars, and when she got across, she placed both feet on the metal bar step and tried to turn around. As she tried to turn, both feet slipped off the step and her crotch took a direct hit (Wave your hands if you have done something like this in your life?!?!?). She said she cried, got off the steps, and walked over to a corner for the rest of the time. She didn't tell any of her friends, and she didn't any of the adult safety patrols either. As she waddled back into school, she did mention it to her teacher. Her teacher told her, "You need to be careful because that area is very sensitive" and that was the end of the conversation. She continued through the day without mentioning it to another soul.

At 3:16, I went to school to pick Riley up (Keegan was not in school that day because he was up vomiting the night before). As she came out the doors, I could see that she was not walking well at all. I asked what was wrong and she told me that she fell off of the monkey bars and hit her crotch on the metal bar step. A shiver went up my spine because I KNOW how badly that hurts.
I asked her if she was OK and she told me, "It hurts a lot". I had one errand to run and thought she might be OK to run it with us. We got to the store and looked around a bit before the the gruesome foursome all blurted out that they had to go potty. I sent the boys into the boys room, and the girls into the girls room and I waited right outside both bathrooms. The girls were in no longer than 30 seconds when Carson came out and said, "Mom, Riley has blood in her undies!!" I called the boys out to come into the girls room with me, and noticed that Riley did indeed have blood. I knew her monkey bar accident was much worse than she lead onto be. I grabbed all four kids, put the items I had back, and we headed back to the car, but not before putting a call into the peds office. After a bit, I finally got a hold of our nurse and she told me to take Riley home, examine the area if possible, and if anything got worse in the mean time to take her right to the Emergency Room.

On our way home, I called Matt and my mom to see who could come cover the 3 amigos while I worked with Riley. She was in so much pain that I just took her right to the ER. She was SO scared that they were going to have to do surgery. She made it very clear that surgery was not on her agenda!! Luckily, it was a slow afternoon in the ER, we were able to get in right away. As they took us into triage, the nurse asked if this could be anything other than an accident. It took a second for it to register what she was talking about, then I said, "NO, this girl LOVES the monkey bars and she had the callouses on her hands to prove it". At that point, I got scared!

The staff was great. They had a female NP on and she took the lead. She was able to take a small peek at Riley and the damage that was caused, and between the both of us we decided it was best to call in a OB/GYN to make sure she wasn't hurt worse that what we saw. For that to happen, they needed to sedate Riley so she wouldn't fight us. The sedative they used was Ketamine. We had never used that one before and was a bit nervous of the side effects. The ER doc assured me that if monitored closely she would be alright, which she was. Once the drug took affect, the poor girl was chasing bugs on the ceiling, but never notice the OB/GYN examining her. After a good peek, the doc noticed that she had a good 1 inch cut, but because of the location he was not able to place any stitches. After he finished, we waited for the sedative to wear off, which caused her to be severely dizzy, which then caused her to puke. 2 doses of Zofran were given to help with the vomiting. After about 1 1/2 hours of recovery, she finally came through all the meds and we were able to go home.

Riley stayed home Friday with a doctors note, but it was hard on her. She didn't leave my side, she cried all weekend, when my parents came over she hid from them, not talking to them while they were here - which is VERY odd for her. I am not sure how much more trauma this little girl can take. She is not playing with any of her friends at school and she is barely participating. I've talked to her teachers and they are on board with getting the school counselor on board and maybe even some outside help. I am afraid Riley is slipping back into her egg. If anyone has any suggestions for me, please leave a comment.

Damn Chiari, Damn metabolic myopathy....

2009-10-07T08:24:00.000-07:00

Just talked to the neurology nurse and Keegan is being scheduled for an EMG, spinal tap, and a possible muscle biopsy. Got to just freakin' love it!

Frustration

2009-10-06T07:39:00.000-07:00

Keegan had his appointment with Dr. I yesterday to discus his chiari treatment plan. Let's just say I was frustrated beyond belief. Trying to feel more at ease today. I am not very excited about Keegan's chiari treatment plan to say the least. Neurology ordered the MRI that they wanted, not the one that NSG needed, now we have to go back for another MRI - yeah at $13,000 a pop. We did testing with neurology for metobolic myopathy, and it all came back negative. After weeks, now they want to do more testing - for what NSG couldn't tell me. Plus they want to see how Carson does in a few months before they bring surgery back to the table for Keegan. What does Carson have to do with Keegan's treatment plan?

On the way home yesterday, Keegan asked," Why don't they help me like they helped Carson?"

My little friend, Mikayla

2009-09-26T17:56:00.000-07:00

For you that have not have significant medical bills for your child, consider yourself LUCKY!!

Many of us have NOT been so lucky.

My little friend, Mikayla and her parents Mike and Liz are among the few that have not been so lucky. Mikayla has craniosynostosis (the same as Carson, Cooper, and Keegan) and had surgery not so long ago. Mike and Liz are self employed and they are paying out the rear for their insurance in the first place. I do believe Liz mentioned that they pay $1200 a month for their insurance!! That is crazy HIGH, but it's what they need to do so that they have some coverage for their family.

Liz mentioned that Mikayla's surgery bills have started to pour in and it is not a pretty sight. As of a few days ago, the medical bill amount was up to 156,000 and THEIR insurance has only paid 66,000 of it. That means the rest is up to Liz and Mike.

Liz has started a pay pal account for donations. Please, if you can spare $5.00 (or more) I know this wonderful family would be so grateful!

"Thank you all for the bottom of our hearts! The Harbord Family"

* Look under LINKS on the right hand side and watch for " Make a donation for medical bills" and click that.

Today, Liz and her family did something for us (joined in on a chiari walk) and would LOVE to do something for her!

So gald

2009-09-25T15:30:00.000-07:00

Thank you everyone for your comments. I am glad to hear that FB is not stealing the show!

UPDATES

Keegan: His MRI has been moved from Oct 14Th to Sept 30Th due to some different symptoms that have been occurring. I am hoping that Dr.I and Dr. I will share the scan and a decision will be made quickly to decide what to do. I hate to say it, but before we know it, it will be December and we will all be busy with Christmas. EEK! I will update the results after next Wednesday.

Riley: She has been complaining of "spine" pain. I am not to sure what to think about it so I decided to let the experts take her on. I took her to the pediatrician twice and neither had anything to say other than you better take her to Dr. I. While we were waiting to see Dr. I, I decided to contact my chiropractor buddy and to have him take a peek. I took her in and had our MRI in tow. We looked over her scan together and noticed something funny. She had a pretty big c curve on her spine. He asked if it would be OK if he took some x rays of Riley to see if we could see that same c curve on x ray - we did, but it was not as bad. He did notice something else though. Riley has a 1 cm leg length difference. He put a lift in her shoe and sent us on our way. Hopefully this will help straighten out her spine and prevent any further curvature.
We had our appointment with Dr. I last Thursday and decided it was time to have a repeat MRI done. Not sure when that will be, but I will post as soon as I know. Hopefully we will have some answers to her pain after that.

Carson: Continues to recover from her chiari surgery. She is actually doing really well. Her 3 month post op MRI will be on Nov 19Th. She really looks fantastic.

Cooper: Coop is doing terrific! No medical updates for him! YEAH!!!

Thanks everyone for hanging in there with us. We appreciate all the support.

Darn Facebook!

2009-09-21T06:36:00.000-07:00

Ever since I started my FB page I have slowly been loosing my comments on my posts!!

Please, if you are out there and still reading, let me know by posting a comment. If not, I may just have to shut down the blog and keep going with my FB page.

We wouldn't want that now would we???

JPF Gala video

2009-09-17T18:18:00.000-07:00

You have got to see this FANTASTIC video! Makes my eyes water as I watch it. Watch for picture number 68 adn 70...you just might know them!

JORGE POSADA Foundation Gala NYC Sept 10, 2009 - Craniosynostosis

Today and my melt down

2009-09-17T14:38:00.001-07:00

Carson and her hero! One of the greatest craniofacial surgeons out there!

Home from Carson's one year post op (and CT) second cranio surgery appointment. Riley is having "spine" pain and will go to Madison next week. Keegan is having terrible leg pain and will be having a spine MRI soon in Madison. It looks like he will have his chiari surgery before Christmas. The shit never stops. I am wearing thin. Cried at Carson's CT for no reason. Just need a day to myself.

Riley and Keegan's soccer pictures

2009-09-16T07:37:00.000-07:00

The begining

2009-09-13T05:46:00.000-07:00

A few of you asked where the begining of my blog is, well here it is - THE BEGINING. If you scroll all the way to the bottom you will find my very first blog entry. Just to warn you, I've been blogging since Carson and Cooper were born - and they will be 4 in November.

Good luck and Happy reading.

My little friends, Thomas and Mikayla

2009-09-12T19:33:00.000-07:00

As many of you know, we just arrived home from the most fantastic gala. The Jorge Posada Foundation gala in NYC was amazing. It brings tears to my eyes to see how many wonderful people turned out to help raise money for Craniosynostosis. The Posada's are truly a blessing!

Anyhow, I will write more about the gala in the next post, but I wanted to share something else with you first.

At the gala we met so many wonderful families who have all suffered like we have. These two touched me the most.

This is Thomas, and he has craniosynostosis.

And this is Mikayla, and she has craniosynostosis

Please take a moment to read about their journey.

NYC

2009-09-07T20:45:00.001-07:00

We are packed and ready for our adventure tomorrow out to NJ to see my grannie and to experience the Jorge Posada foundation gala in NYC on Thursday! Just wish the rest of the family could join us. I will post after the gala on Friday.

This trip is going to be bitter sweet for me. SO excited for Carson and Cooper to be invited the the JPF gala, but I'm really sad that I am going to miss Riley and Keegan's first soccer game this coming Saturday!

First day

2009-09-02T18:45:00.000-07:00

First day of school, and first day of soccer.

First day of FIRST grade

Keegan, Mrs. Toonen, and Riley

Riley, Bill McClone (principal), and Keegan

The "Quad" squad

Alex, Elizabeth, Riley, and Keegan

The "new" Mia Hamm

To you, my sisters of Special Needs Children

2009-09-02T06:43:00.001-07:00

To you, my sisters of Special Needs Children

By Maureen K. Higgins

Many of you I have never even met face to face, but I’ve searched you out every day. I’ve looked for you on the Internet, on playgrounds and in grocery stores.

I’ve become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my “sisters.”

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist’s offices and NICU units, in obstetrician’s offices, in emergency rooms, and during ultrasound’s. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.
Something wasn’t quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children’s special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children’s needs are not as “special” as our child’s. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know “the” specialists in the field. We know “the” neurologists, “the” hospitals, “the” wonder drugs, and “the”" treatments. We know “the” tests that need to be done, we know “the” degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment
for our children with spinal cord defects. We have sued
municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during “tantrums” and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated insane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can’t understand what it’s like to be in our sorority, and don’t even want to try.

We have our own personal copies of Emily Perl Kingsley’s “Welcome To Holland” and Erma Bombeck’s “The Special Mother.” We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors’ front doors on Halloween, and we have found ways to help our deaf children form the words, “trick or treat.” We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We’ve gotten up every morning since our journey began wondering how we’d make it through another day, and gone to bed every evening not sure how we did it.

We’ve mourned the fact that we never got to relax and sip red wine in Italy. We’ve mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we’ve mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

First one, now two, maybe three???

2009-08-27T17:08:00.000-07:00

Today, Keegan had an appointment with Dr. "I" in neurology. We were there to discuss a plan of treatment for his sever leg pain. We chatted about the plan, and let me tell you it was no where what I had thought it would be.
We see 2 Dr "I's", 1 in neurology and they other is our neurosurgeon. 1 doc is treating his chiari and the other one is trying to weed out metabolic myopath. Over the last few weeks, Keegan has been going in for blood and urine tests. The test that they running have come back normal thus far. The symptoms are pointing back at Chiari.

Because of our "strange" chiari family back ground, and the weird crowded posterior fossa, they are finding that our children are proof that even though they have no major herniation, they still have true chiari symptoms. With that said, Dr. "I" believes that the decompression surgery is helping our kids symptoms.

Normally, if kiddos come to Dr. "I" with the MRI that my kids have, he would not be so aggressive. Maybe put them on something to help with their symptoms but certainly not offer surgery - as we've been told. But because of our strong family history, Dr. "I" is being a bit more aggressive with Keegan.

At our appointment today, we were told that Dr. "I" is open to decompressing Keegan, again because of the history.

The metabolic myopathy testing is being done just to check all other sources before heading down the chiari road. We are waiting for 1 genetic test to come back, and if it comes back normal, Keegan will have another MRI to see where things are. Then we will talk about the "open to decompress" idea.

Heroes4hope

2009-08-21T18:45:00.000-07:00

OMG...So excited!

Carson and Cooper have been invited to the Jorge Posada Foundation - heroes4hope Gala on September 10th!! Jorge is the catcher for the Yankees, and is son also has craniosynostosis. Because of that, Jorge, and his wife Laura, started a foundation to help families with Cranio!!!

The Gala is in New York City. The spotlight this year is on the 20 greatest (living) Yankee catchers. The cranio kids will be walking on stage with a Yankee Catcher!

HOW COOL IS THAT???

If anyone cares to join us, tickets are: $750.00 a person! EEEK!

Here is a quick video done by Laura Posada:

http://www.youtube.com/user/posadafoundation

Carson's Chiari surgery pictures

2009-08-15T09:07:00.000-07:00

August 4Th, 2009

Waiting so patiently in the waiting room

4 hours later in the recovery room

OUCH!

24 hours post op

PEEK~

48 hours post op

72 hours post op

Carson in the positive image salon getting her nails painted. (no, she is not with Diane Sawyer)

96 hours post op ~ Yum, Eggs!

5Th day ~ Finally going home!

It seems like forever

2009-08-13T19:37:00.001-07:00

Holy cow does it seem like forever since I last posted here!! EEK!!

I've been gone, but hopefully not forgotten!

As many of you know, My 3 yr old daughter, Carson, had her first chiari decompression done on August 4Th with an outstanding neurosurgical team. Surgery took around 4 hours, from the time I left her, to the time I got to see her beautiful face in recovery. Things moved pretty smoothly prior to surgery. She did fairly well up until she saw the gown and then freaked out. She kept telling me to put her shoes on and that she wanted to go home. When the time came to take her to the OR, I put on my scrubs and carried her into the OR and placed her on the table. She was one scared little girl.

She came out of recovery just fine and was moved up onto the PICU floor. She spent 24 rough hours in the PICU and then was moved onto a regular neruo floor. For the most part Carson recovered well. She had about 3.5 days of vomiting, but other than that she was a trooper.

We spent a total of 5 days in the hospital. She is now 1 week, 2 days post op and is doing fairly well. She is having a lot of muscle spasms, but has been given meds to help with that.

Today we had our 1 week post op appointment with the NSG and things are progressing nicely, besides the pain. Knock on wood that things continue to move in a positive direction.

We will meet with the NSG again in 3 months for a post op MRI.

Until then we are laying low and relaxing. Thanks to everyone for your thoughts, well wishes, and prayers.

Surgery update

2009-08-03T09:13:00.001-07:00

Carson's surgery is scheduled for 7:30 am on Tuesday. This will be my last post on my blog until we get home. If you want to follow her progress, please go to...

www.caringbridge.org/visit/carsoncole

Thanks!!

Pictures

2009-08-01T17:19:00.000-07:00

A week at the lake with Cousins...

Jane with Cooper

My family

The cousins

Riley and her godfather Jerry

Riley

Mike and Mandy

Linda and Riley

Keegan and Brandon

Carson tubing with the girls

Jerry and Tawnya

Happy Birthday NANA!

Taylor

Jerry and Jolene

Brayden

The cousins

BREAKING NEWS.......

2009-07-27T12:44:00.001-07:00

Neurosurgery called and Carson's chiari decompression has been moved to Aug. 4Th. EEK!!! I think my stomach has just jumped up to my throat!!!

So many have already asked where they can send cards and such. I wouldn't normally post it here, but here it is....

American Family Children's Hospital
1675 Highland Ave.
Madison,WI 53792
Phone: (608) 890-5437 (general information)

Keegan's neurology update

2009-07-23T14:25:00.000-07:00

Heard from the nurse. They dont think the headaches and leg pain are from the Chiari. They think it is a muscle quality issue. They are looking at Metabolic Myopathy

~Metabolic myopathies refer to a group of hereditary muscle disorders caused by specific enzymatic defects due to defective genes. Metabolic myopathies are heterogeneous conditions that have common abnormalities of muscle energy metabolism that result in skeletal muscle dysfunction. Most recognized metabolic myopathies are considered primary inborn errors of metabolism and are associated with known or postulated enzymatic defects that affect the ability of muscle fibers to maintain adequate energy and adenosine triphosphate (ATP) concentrations. Traditionally, these diseases are grouped into abnormalities of glycogen, lipid, purine, or mitochondrial biochemistry.

They are still waiting on a few more results, Plus she wants him to have a few more labs drawn by Annika (Our Ped.). IF the tests all come back negitive, then she wants to do an electrical stimulation test done on his leg muscles. They poke about 30 needles in his legs and send the electrical stim through to see how the muscle react ~~ WITH sedation!! So.....It's is not becoming an easy issue either!!! SHIT!!

Date

2009-07-20T13:11:00.000-07:00

Surgery has been scheduled for September 9th.

Same road, different child

2009-07-20T09:23:00.000-07:00

Its been almost 1 .5 years since Riley's chiari decompression and she seems to be doing well! Which is FANTASTIC! Except now, we are going to be headed down that dreadful road again.

Today, Matt and I had a "family" meeting with Dr. I about the game plan for Carson. We didn't even bring Carson along for fear that I would be an emotional wreck. We talked a little bit about Carson and her symptoms and then the dreaded word "decompression" came up, again.

As we speak, Dr. I's nurse is trying to schedule a date for Carson chiari decompression surgery. It will either be mid August or Early September. After the experience we had with Riley, I am scared to death. I am not really a crier, but tend to laugh more - only because I can't seem to figure out why we keep going through these situations and I try to hold my emotions in. Today, I cried. I cried in front of people I don't know in the middle of a restaurant. This SUCKS!!!
I don't even know how to explain it to her. I am pretty sure that until we get her in her gown she may not even understand what is going to happen. HOLY CRAP!! This is going to be a tough one!!

I will let you know when surgery is scheduled for.

Pissed off (am I allowed to say that?)

2009-07-19T10:39:00.000-07:00

What a fantastic Chiari and Syringomyelia conference!!

Dr. I did a great job organizing it!

Thank you!!

I must say, I came home after 3 long days of lectures with my brain FRIED! Not just because of all the intense info that we learned, but it was very emotional as well. First of, the population that was at the conference wasn't what I was expecting. I was expecting to see all sort of parents, but that wasn't the case. Actually, their wasn't much of that at all. Most of the population was probably in their 50's and older. Most of them suffering themselves. Some in wheelchairs, some using walkers, some with braces on their legs, Some whom you could tell had their vertebrae fused, and some even with service dogs. Let me tell you, it put a huge LUMP in my throat!! To think that could be MY children when they get older, or could it be??

We learned about everything from Definitions, concepts, and treatments, to Neuropsychological issues, to Occult spinal dysraphism, to complex chiari: to fuse or not to fuse, to Pain management, to Genetics, to Hydrocephalus and shunts, to Audio-vestibular dysfunctions. EEK!!!

It was a very emotional conference. Its hard not to think of your own children while they are talking about the same issues you children have. A lot of people tried to make this conference personal, but the NSG wouldn't allow it. If you started to ask a personal question about your own issues, they shut you down and asked that you talk to them privately and not in front of the the whole audience.

Chiari and Syringomyelia affect everyone differently - no two stories are the same. So when the NSG talked to you it had to be in "general terms".

On Saturday morning we got to meet the CEO of ASAP and he showed us his power point that I do believe pissed a few people off. Mike showed us a chart that showed which conditions (population affected) were receiving funding for research and out of the 15 - 20 conditions he put up, guess which one was at the bottom? You guessed it ~ Chiari & Syringomyelia!! We have a whopping population of close to 300,000 people who are affected by these conditions and we are receiving ZERO funding to help find a cure. See why it pissed people off????

Here are some of the symptoms of Syringomyelia:
Symptoms develop slowly over time, but can come on suddenly after a fall or minor trauma. Sensation may be affected first. Some common symptoms include:

•Loss of sensitivity to hot and cold
•Numbness and tingling
•Bowel and bladder function may be affected
•Scoliosis
•Pain
•Muscle weakness
•Spasticity
•Paralysis (in severe cases, quadriplegia)

Scoliosis may be the only symptom in children. Often people with scoliosis undergo spinal MR imaging because of an atypical left-sided thoracic curve.

Here are some of the Chiari 1 Malformation symptoms:

Headaches, often severe, are the classic symptom of Chiari malformation. They're typically precipitated with sudden coughing, sneezing or straining. People with Chiari malformation type I also can experience:

■Neck pain (running down the shoulders at times)
■Unsteady gait (problems with balance)
■Poor hand coordination (fine motor skills)
■Numbness and tingling of the hands and feet
■Dizziness
■Difficulty swallowing (sometimes accompanied by gagging, choking and vomiting)
■Vision problems (blurred or double vision)
■Slurred speech
Less often, people with Chiari malformation may experience:

■Ringing or buzzing in the ears (tinnitus)
■Poor bladder control
■Chest pain, in a band-like pattern around the chest
■Curvature of the spine (scoliosis) related to spinal cord impairment
■Abnormal breathing — specifically, sleep apnea characterized by periods of breathing cessation during sleep

Don't you think that people with this condition deserve to be able to find a cure????

October 10th is "Collect for a cure"day nation wide. Please let me know if you would be interested in standing with us and collecting coins and handing out information. We need to find a cure. I don't want my 3 children or anyone elses ending up in a wheelchair, walker, or worse......

I'm FREE

2009-07-14T19:24:00.000-07:00

I am off to Madison tomorrow for a 3 day Chiari Convention.

3 days I will be with out a child!

YAAAAAAHHHHHOOOOOOO!!!

I am hoping to learn a TON of info and figure 1 of 2 things will happen. I will be bored out of my mind, or my eyeballs will be floating in medical info!!

Anyhow I am just so excited to be going.

Please keep my mom in your prayers as she will have all 4 kiddos while I am gone!!!

Fun in the sun with friends

2009-07-14T12:51:00.000-07:00

We had a great time with the Vanden Wyngaards this past weekend at the lake!! The kids had a blast, the parents had a great time and the weather was B*E*A*U*T*I*F*U*L!!

We could not have ask for a better time!! Thanks to my friend Jenni (and her assistant) and her shnazzy camera we have this beautiful picture video!

Enjoy!!

http://video214.com/play/jN7QT9JiDTLHZNfOxqIPxQ/s/dark

Fixed

2009-07-12T19:16:00.000-07:00

Hi All,

I know some of you have been having a hard time getting into my blog, me included! Well, I removed some of the applications and by george, I think I've fixed it!!!

Please leave a comment for me for me if It is working better on your end!!

No news just might be bad news

2009-07-10T20:06:00.000-07:00

A few weeks ago, I posted about Carson's CMG results. Up until today, I had heard pretty much nothing (important) from Dr. I.

This afternoon, Dr. I's nurse called to tell me that that she and his other nurse finally got a minute to "tie him down" and ask him a few questions about Carson. She did tell me that he and the urologist got a change to speak about the CMG results, he reviewed Carson's MRI over and over again, they chatted some more, and pretty much told me that he can not find the connection to the neurogenic bladder issues.

2 days ago I had the chance to chit chat with Dr. K's (urologist) nurse and again, she told me that there are only 4 causes to the neurogenic bladder.

1. Chiari Malformation

2. Spina bifida

3. Tethered cord

4. Syrinx (cyst on the spinal cord)

We know, and from her latest MRI, Dr. I knows that she does not have 3 out of the 4, and her chiari is minimal.

So, where does that put us?? Who knows. We were told that Dr. I is not sure what to do, and that he wanted to see us as soon as possible for a "family" meeting. Where that will lead, I am not sure, but I can sure tell you that I am scared to death!

It would be nice, just for once, to have a NON COMPLICATED diagnosis!!

A day at the pool

2009-07-06T17:25:00.000-07:00

As for Monday Measurements:

Goal: 40lbs

Today: +1

Not bad for 5 days in Indiana.

Starting fresh again today!!!!

Trip

2009-07-05T20:20:00.000-07:00

It's been a while since I have blogged but I have an excuse! We took a bit of a trip to Indiana to see Matt's family. We don't see Matt's side very often, but when we do, we have a great time. This year we got to spend the 4Th with them.

Do you think they are all related???

Riley and Erica

On our way home from Indiana today we pit stopped at our favorite "cousins" house. What little time we had with them today was fun!
Thanks for lunch Moll!!!

*I will post my Monday measurements again tomorrow.

2 - 3yr olds, a pair of scissors, and an unsucessful nap.

2009-06-29T08:05:00.000-07:00

Last week, I was outside reading a book on the deck when a blood curling scream came from Riley's room. After I rushed up the stairs, threw open the door, this is what I found!!After Keegan had packed away his Kindergarten paperwork, he also packed away his pencil box with his crayons and scissors - GUESS WHO FOUND IT??

Riley was in shock that about 10 of her barbies and brats all had haircuts like hers.

Some fun in our "OWN" sun!

Good News, Bad news, No news

2009-06-26T18:41:00.000-07:00

Today after Riley and Keegan got home from summer school we were off for a fun day in the sun at the local pool. My mom and I juggled all 4 kids and we didn't even loose any!

This morning, prior to the pool, I had a meeting to find out if Carson and Cooper qualified for early childhood in which they did not. It's sort of a good news, bad news thing. There are some area that Carson needs help with, but not enough to actually qualify for assistance.

No news from Dr. I's office today on the plan for Carson. Actually, there won't be any news for awhile because he is out of the country until the 2nd week in July. CRAP!!

Spam

2009-06-26T06:26:00.000-07:00

Traci:
I got your email, but it had gone to my spam folder. I tried emailing you a LONG email, but when I went to send it, It disappeared!!! Your email is no longer in my spam folder either because it cleared itself out. So, I am not sure if you got my email or not, but if not, I no longer have your addy either......UGH!!! Could you send me another one just to get your addy? Thanks! It's going to be a rough day if I cant even work my email!!

For the rest of you, Carson and Coopers eval for early childhood went well. I should find out this morning is they qualify or not. Also, today is D day to get some answers from Carson CMG. I will post again if I hear anything.

Thanks!!

Carson's CMG results

2009-06-22T19:51:00.000-07:00

There is no great way to start bad news, so I will just lay it out there.

Carson had a HARD time today with her CMG (cystometrogram) bladder test. The test should have only taken 40 minutes and instead it took 2 hours. A L........O.........N.......G, grueling 2 hours. Carson has bladder spasms and every time her bladder had a spasmed she SCREAMED bloody murder. She spasmed every 15 - 30 seconds. After the first 30 minutes we were both sweating to death, and she was so pissed off at me and the world.
They sedated her at 3 different times. It was nuts. I just hope she doesn't remember to much of it because it was traumatic for her. I do think it was the first procedure that I cried at.

So...here are the results. Carson has a Neurogenic Bladder. For her age and her weight she should be able to hold 115ml / 150 mls of urine. Today, she only held 30 mls. Not good.

Here is a little info on her condition.

What is a neurogenic bladder?

Neurogenic bladder may also be called neuropathic bladder. The muscles and nerves of the urinary system work together to hold urine in the bladder and then release it at the appropriate time. Nerves carry messages from the bladder to the brain and from the brain to the muscles of the bladder telling them either to tighten or release. In a neurogenic bladder, the nerves that are supposed to carry these messages do not work properly, essentially paralyzing the bladder.

What causes neurogenic bladder?

In children a neurogenic bladder may be secondary to a birth defect or it may be acquired as the result of a different problem. The following are some of the most common causes of neurogenic bladder:

- Spina bifida defect that occurs during early fetal development. The defect consists of incomplete bony closure of the spinal cord through which the spinal cord may or may not protrude.

- Spinal cord trauma

- Central nervous system tumors

In many cases, neurogenic bladder is associated with the following:

-urine leakage (this often occurs when the muscles holding urine in the bladder do not get the right message)

-urine retention (this often happens if the muscles holding urine in the bladder do not the message that it is time to let go)

-damage to the tiny blood vessels in the kidney (this often happens if the bladder becomes too full and urine backs up into the kidneys, causing extra pressure)

-infection of the bladder or ureters (this often results from urine that is held too long before being eliminated)

Brainstem:
The brainstem is located at the base of the skull. Within the brainstem is a specialized area known as the pons, a major relay center between the brain and the bladder. The pons is responsible for coordinating the activities of the urinary sphincters and the bladder so that they work in synergy. The mechanical process of urination is coordinated by the pons in the area known as the pontine micturition center (PMC). The PMC coordinates the urethral sphincter relaxation and detrusor contraction to facilitate urination.

So with all that said, Dr. "K" will take the results and talk with Dr. "I". I am anxious to hear what Dr. "I" has to say. Is this Chiari related? Or have we opened a whole different can of worms??

After all that' I should report in with my weight loss progress:

Today's loss - .5

Not great, I know, but I am really struggling here.

**Traci, thanks for the comment, but I have no way of contacting you. Please email me at coletwins03@yahoo.com Thanks!

Picture updates - Baltimore

2009-06-21T08:57:00.000-07:00

I am so behind on updating pictures. Here are a few from our "Girls weekend" out in Baltimore.

Carson and Dr. Ben Carson

Jenni and Carson hanging out
The Ronald McDonald House play room

The kitchen - where we met the our new favorite "spice" girls! Miss ya ladies!

Our bedroom

LOVED this sink we had

National Aquarium

Thanks for the popsicle SUGAR!

Monday measurement - behind

2009-06-19T19:12:00.000-07:00

We are in our 2nd week of Summer vacation and it's been busy.

The kids started summer school this week and they are loving it. I'm loving it too.

I didn't get a chance to post on Monday for " Monday measurements" but it wasn't to exciting. Anyhow, here it is:

Goal: 40 lbs

Last week: -3 = 37lbs

This week: -1 = 36lbs

It's not great, but it is a move in the RIGHT direction.

We've got a crazy busy week coming up.

Monday, Carson's in Madison for her CMG test, and then on Thursday both kids will be evaluated for Early Childhood, and it they qualify, the IEP meeting will be on Friday. It would be great to have them in school this fall.

I am hoping to have more answers about the chance of a possible Chiari decompression. The unknown is really killing me. UGHHHH!

Anyhow, I will update next week as soon as I can.

Here are a few pictures of the past few weeks.

Pictures

2009-06-12T19:30:00.000-07:00

I am so behind in updating pics - so here are a few....

Riley's EEG

The lake house

Sunset at the lake

The kids at the beach

Miss Riley

Keegan trying to catch tadpoles

Carson and Coop

Riley and her tadpole

Tadpoles

Our other lake friend

Brownies and cheese curds...never a good sign

2009-06-11T15:07:00.000-07:00

Especially when it comes to dieting!

It just means that our doctors appointment with Dr. I went a bit more "south" than I would have liked it to. Riley got an Ok report. She was a bit nervous to meet the new doc, but did well once she warmed up to him. She did really well with her neuro exam and didn't seem real worried about her "starring spells". We will just keep an eye on it.

Carson on the other hand didn't really get the news I was expecting. Her sleep study cam back ok - but he really wasn't worried about it. BUT he did compare Carson and Riley's (per op) MRI scan and told me that they are exactly the same. If it wasn't for the rocking and the incontinence issues he wouldn't be to worried about her right now, but because she has theses issues the "D" word came into the conversation - DECOMPRESSION. Carson is having a CMG Bladder test done on the 22 and if Dr. K believes her "potty" issues are neurogenic, Dr. I will lean towards a chiari decompression. If he doesn't not believe her issues are neurogenic- then we MAY hold off for a bit to see if it will improve.

So, on that disappointing note.....I am eating fresh cheese curds. It's a Wisconsin thing!

Mondays measurments

2009-06-08T17:21:00.000-07:00

Sorry I am a bit late on the weigh in today. We are up at the lake and when we are here time just gets away from me. Sooo...

Need to loose: 40 lbs

Today's loss: 3 lbs
----------
Left to loose: 37lbs.

Pretty good for a few days on and a day or 2 off.

Today, Riley lost her 5th tooth! Between the 2 kids it's RAINING teeth here!

They are sure keeping the tooth fairy busy.

I will post pics when I am able.