Headed East

Tomorrow is finally here! Carson, Jenni, and I will board our plane and head East to Baltimore. Johns Hopkins, here we come!
I can't even begin to tell you all the emotions that are going on within me right now. I'm scared, excited, nervous, relieved......it's amazing.

We heard yesterday that there will be a room waiting for us at the Ronald McDonald house and we will be there through Sunday morning

I will try to update with answers, thoughts, or anything else spectacular or not from Dr. Carson as soon as I can.

Our appointment is on Friday - sometime in the afternoon. We've heard its a lot like seeing Dr. Frim. Hurry up and wait. It could be a possible 2 - 4 hour wait to see him, but if he has answers....it will be well worth it.

Talk to you all from Baltimore.

Say a little prayer for my parents who will be assisting Matt with the other 3!

Surgery, and procedures, and meds, OH MY!

Carson had an appointment with the Urologist yesterday and things went OK. I learned a lot.

I learned about a possible surgery she may need, about a procedure she will be having, and 1 new medication.

Here is the poop scoop from Dr. "K".

1. He thinks she has: Detrusor hyperreflexia; Irritable bladder; Spasmodic bladder; Unstable bladder; Incontinence - urge. She is on a NEW med for this.

2. He also thinks her bladder and sphincter are fighting. Bladder wants to pee, sphincter says NO, and that causes that urine to go back and forth bringing bactria in.

3. He is waiting to see how bad her kidney reflux is -When urine from the bladder flows back up into the kidneys, this is called vesicoureteral reflux. Urine normally goes only one way. When urine flows back up from the bladder to the kidneys, germs can get into the kidneys. This can lead to infection in the urinary tract. If reflux isn't noticed, the repeated infections can lead to scarring and disease of the kidneys. If it is bad enough, she may need surgery to repair the little flap in between the bladder and uteres (A small cut is made in the belly. The bladder is opened up and the affected ureter cut free. It is then folded and tucked under the lining of the bladder so that it can serve as a type of valve).

4. They are planning on doing a sedated CMG - cystometrogram (commonly referred to as a CMG) is an electronically recorded measurement of the bladder pressure, bladder activity, and the degree of sensation present during bladder filling. It may also be used to test the ability to initiate (start) and and inhibit (stop) bladder contractions. Trying to get that planned in May sometime.
AND at this point he is 85 % sure that it is neurological (Chiari 1 related).

I will be packing all this info up and taking it Dr. Carson, too.

So - that's that.
Thanks for checking in on us!

Book order

If you plan on purchasing Kaci's book, please leave your name in my comment section of my current post.

My goal is to help spread cranio and chiari awareness and to help sell 20 books!!

Go BUY it

Many of you have heard me talk about my dear friend Kaci. The one who helped me through 3 cranio surgeries, and (who knew) 1 chiari surgery. This woman has been my life line when things have gotten tough. Why? Because she has BEEN there!

It has been amazing to have Kaci as my friend. It's one thing to have people understand craniosynostosis. It's one thing to have people understand chiari malformation. But it is a whole different story to understand both - and Kaci does.

Kaci and her husband , Rea, have been through it all. They have 2 beautiful children, Madi and Austin and between them they have endured 13 painful surgeries for cranio and chiari.

This last year Kaci witnessed something fabulous - the publishing of her book Light Will Emerge. The story of their life with cranio and chiari. I would highly recommend reading it. It will shed a little bit of light on what we are struggling with.

Here is a little intro:

Book Title: Light Will Emerge

About the Book :

Kaci’s children have craniosynostosis, a condition where the infant skull sutures (openings) fuse early and a secondary condition, chiari malformation, caused by the growing brain pushing its way down the spinal column. With 13 surgeries between the children, the Kings are often asked how they manage daily life along with the difficult diagnoses and seemingly endless trips to the operating room. Finding help did not come easily. Kaci trusted her instincts and pushed on, focusing on the children’s health and leaning on sources of strength. The conditions could be fixed once they found a doctor who knew how to help. Their continued search led to Dr. Ben Carson, Chief of Pediatric Neurosurgery at Johns Hopkins Hospital: an angel in disguise. The children would have suffered gravely without the treatment they so desperately needed.
As Dr. Carson states in his foreword, "In Light Will Emerge, Kaci King has provided a wonderful mechanism to gain foreknowledge of the difficulties of navigating the medical system…” There is hope even in the worst of situations, blessings when most aren’t sure any exist. Life is about attitude. Kaci was taught that for every action, there is a reaction, good or bad. She shares her family’s journey: how they coped; how they found their inner strength; and how not knowing what else to do, they prayed. Kaci offers a wealth of information explaining the medical conditions, websites and online support groups. Through this book, she sheds light on what helped them overcome obstacles, how they found strength during difficult times, and encourages others who may feel hopeless. Kaci shares the heartache and many blessings received throughout this journey.
Light Will Emerge enables parents and caregivers to push on to find help in a medical crisis and hopefully to help medical professionals understand their very real story.

About the Author
An Ohio native, author Kaci King has been on a significant medical journey with her children. Her children have taught her many of life’s lessons. With that, she’s had some of life’s greatest ups and downs.
Aside from being a mother, Kaci is also a wife, daughter, friend, business owner, farm owner, author, pianist, 4-H mom, Girl Scout leader, traveler and horseback rider. Kaci and her husband, Rea, have two children, Madi and Austin, who share two medical conditions called craniosynostosis and chiari malformation. Kaci is one of two siblings raised in Lewistown, Ohio. Kaci graduated from Indian Lake High School in 1991 and obtained her college degree from The University of Findlay in 1995.
After the children were diagnosed, Kaci became an integral part of internet support groups, helping others along the same journey. She currently manages an international family match up program with pre- and post-op families to provide the family going through surgery with additional support from parents who have already been through it for a support group called Cranio Kids. Along with organizing this support system for others, writing has been very healing and rewarding for her.
With this book, Kaci hopes to be able to help those navigating the medical system, those that aren’t going through a medical journey but need to realize that hope can exist even in the worst of situations, and also those that are juggling the same diagnosis.

I could not be more happy for Kaci! She is an amazing mother, an awesome advocate, and I am so proud to call her my FRIEND!

If you are interested in ordering the book, please go here:

http://www.authorhouse.com/BookStore/ItemDetail.aspx?bookid=56046

Thanks!

Pauly

Last night Matt surprised me by taking me to see Pauly Shore for my birthday. It was blast. I had seen Pauly in Milwaukee during my college years, but this time it was up close and personal.

We had a TON of fun!!

Thanks for allowing me to laugh last night. It had definatley been awhile!

Enough

Ok, that's enough me time...back to the kiddos.

Catie, Dr. I's nurse, called to let me know that Carson's ICP placement will be on May 13th (Wed). She will be admitted to the PICU right away and instead of going to the OR like in Milwaukee, the surgical team will come to the PICU. The probe will be placed around 1pm and they will monitor her in the PICU for 24 to 48 hours.

I should also hear soon when her sleep study will be scheduled for. I know that they were hoping that it would be around the same time so that Dr. I would have both results for when we see him again.
Catie told me today that the results of both of these tests and the urology report will determine if surgery is the way to go or not.

We are still holding out for Dr. Carson. I was wishing we'd have the ICP report to show him, but he will have to do without.

Oh, also does anyone know where I cn get the larger size baby legs?? Like for a 3 /4 yr old? They are perfect for the hospital.

Thanks for checking in on us.

My day

HAPPY BIRTHDAY to ME !!! 35 doesn't seem too bad, RIGHT?

Speaking of birthday, I am on the hunt for my biological parents. I have decided that enough is enough, I need to find out some genetic information.

So, if you know anyone who gave up their little girl, born on April 17th, 1974.....please let me know.

Thanks

In need of your help

It's that time of year again! Break out the jogging suit, warm up your tennies, and hit the pavement! Join us if you can October 10th!! If you can't, but you want to help support us, please check out my firstgiving page here http://www.firstgiving.com/cindycole and donate if you can. Every penny counts.

As you know from my blog, we have been spending time at a few different children's hospitals, but CH of Wisconsin will always be #1 in our hearts - that where our journey started.

This will be our 3rd year walking for Children's Hospital of Wisconsin, and it feels great knowing that we are helping the #3 children's hospital in the US - noted by Parents Magazine! LOVE IT!

So, I have decided to do something a bit more exciting this year. Every year, with 10 or more team members, we are allowed to add a design to the back of our team shirts. I would like to open it to YOUR suggestions.

I would love to hear what YOU guys think we should have on the back. We've gone very generic the last 2 years, so PLEASE help.

We are looking for a motivational saying, a quote, a line, anything. Anything you can think of.

After a few weeks we will see if we get anything, and then I will let you guys vote on the winner. We would be honored to have YOUR suggestion on the back of our team shirts.

All you have to do is add it in our comment section with your name.

Thanks!

A bit overwhelmed

By now, most of you are probably sick and tired of me going on and on about the kids medical issues. Well, Let me join the club.
Can I tell you how overwhelmed I am with everything? How frustrated I am? I am also finding out that I have a bit of separation anxiety too.

I am frustrated with all of this, I am overwhelmed with what is coming, and am even wondering if pushing forward is the right move. I don't know anymore. I am truly at a loss.

Tonight I was able to chat a bit with our favorite CF doc and to clear my head a bit (he's GREAT like that). Without pointing too many fingers and without the he said, she said crap I got to vent my anxiety about what our new set of docs are looking into. Dr. I mentioned something about widening Carson's head for a 3rd time and at this point, I am not ok with that and neither is Dr. J. Because we are being seen in Madison, I would be leaving the only doc that I trust. And that to me is tough. I seem to pass everything by him and to not be able to do that any more makes me so nervous.
How do you give up a doc that you have some history with (3 major surgeries) for a fresh new team? I don't know, but I am certainly losing sleep over all of this! Its scary to me!

This is what we are up against in the next few weeks. Carson will be seeing a ped urologist next Thursday to see if her bladder control issues are behavioral, or neurological, We are waiting to hear when her ICP moniting will be, She will be scheduled for a sleep study, and we are headed out to Johns Hopkins to see if we can add some new light.

I truly and honestly don't want to go through any of this anymore. I asked Dr. J if he thought us pushing forward was the right move or not and he agreed that it was. But man........

If it seems like I am having a hard time gathering my thoughts, I am. I am really struggling with this post.

All I know is that my beautiful 3.5 yr old daughter deserves to be healthy.
Maybe this is the punishment I get for making the choice to bring she and Cooper into the world early. I don't know.

I can feel my hands shaking as I write this entry.........

....and its my friggin' birthday on Friday - yeah me.

Happy Easter

Happy Easter from our house to yours

Daddy and his Jay Cutler BEARS egg

Jake and daddy's BEARS egg!

Not your normal Easter dress.

But nothing says Easter like "Harley Davidson"!

Something different

A few weeks ago I started reading Confessions of a CF Husband. It is just amazing what a family endures when they have member with Cystic Fibrosis. This family is a true inspiration.

As many of you may not know, my parents lost their 2 biological children at a young age to CF. They've lived the horrors and the loss.
AS I was reading their blog, I came a across this. This is Eva, and she also has CF. She put together a documentary about having CF and getting a double lung transplant.

Here is a lead to the film:

Spread the word and raise awareness - a true tribute to the power of film and the Internet!

Redefining the traditional scope of documentary film in an electronic age, 65_RedRoses leaves viewers with a new appreciation of life and the digital world. This personal and touching journey takes an unflinching look into the lives of Eva Markvoort and her two online friends who are all battling Cystic Fibrosis (CF) - a fatal genetic disease affecting the lungs and digestive system.

Unable to meet in person because of the spread of infections and super bugs, the girls have become each other's lifelines through the Internet, providing unconditional love, support and understanding long after visiting hours are over. Now at a critical turning point in their lives, the film travels the distance the friends cannot go themselves, capturing the compelling and often heartbreaking realities they face, just trying to take each breath.

VIEW THE TRAILER HERE:

http://www.youtube.com/watch?v=fMGUXOtFxjc&feature=player_embedded


Please keep these people in your prayers as they are struggling too.

Big day

Today, my mom, myself, Keegan, and Carson made the trip to Madison to be seen at

We had our first "official" appointment with Dr. I. He was great, his nurse was great, I just wish our news was a great as they were.

Anyways, I was looking for direction and direction is what I got. But deep down, it is so not what I wanted to hear!!! Know what I mean, Vern?

The appointment went like this.....(Dr. I) "You have 3 NSG. What are you looking to do?" (ME) I am looking to eliminate 2 and to keep YOU". (Dr.I) "Ok, good!"

Then, it went down like this.....

1) Keegan's complaints: Sever leg pain, headaches, and seeing little black fuzzies. His chiari herniation is minimal, but he has a crowed posterior fossa (posterior fossa - depression on the inside of the back of the skull, near the base, where the cerebellum is normally situated) and foramen magnum ( large opening at the base of the skull, through which the spinal cord passes and joins with the brain) So, Dr. I is not sure if his syptoms are chiari related or not. He reffered us to a neurologist and put him on Neurontin, which is used to relieve nerve pain. He will be on this for a few months and then we will revisit Dr. I to see how things are going. Not to bad. OH, and he has been diagnosied with Metopic synostosis (craniosynostosis) Cool hey?

2) Miss Carson: She has minimal chiari herniation, but she also has a very crowed posterior fossa and foramen magnum. Dr. I told us that he believes that 90% of kiddos that have cranio and chiari - the chiari and it symptoms are brought on by the craniosynostosis - no room for brain growth. He believes she could have increased intercranial pressure and has asked that we do another ICP monitor on her, sooner than later. That would be this =>

This is the girl that got so wild after coming out of surgery that I had to get in bed with her in the recovery room and they wheeled her and I up to her room. AND that she pulled the monitor out after 10 minutes in her room. UGH!! OK, if we must!!

Then, he has a sleep study ordered for her, don't know much about that. It will be our first. She will also need to see a ped urologist to see if her bladder issues are connected with her kidney issues or if it is a true symptom of her chiari.

So, we have many appointments scheduled and more pieces of the puzzles to put together.

I will keep you posted. Thanks for checking in on us.

It is SO true!

That if it is not ONE child it IS the other.

First, Carson urine culture came back normal. I was advised by our ped to pick the NSG brain tomorrow and at Johns Hopkins. So, we will.

Second, Riley woke up this morning crying that her right ear hurt. So, off to the peds. She has a dbl ear infection. LOVELY.

Tomorrow we are off to Madison. So excited to hear what Dr. I has to say.

Today, I am watching my brother and Mandy's kids - besides my own. Can you say "SHOOT ME"!

Have a Great Day.

Clean dip

Urine Dip = CLEAN. No sign of UTI, but they are sending it to have a culture done anyhow.

Simply Frustrated.

If it's not one, it's another

We finally got good news on Riley and now I am fearing the worst for Carson!

Carson has been totally "potty" trained for a good while now and her accidents have been very very minor. Up until 4 days ago that is. Each day for about the last 4 days the accidents have gotten worse. She now only make it to the potty about 2 -3 times a day - IF THAT.

During the day, she peed right on the living room carpet. but kept playing.....

Last night as I was putting clean laundry away in the girls room, Carson was running around naked waiting for me to start the tub. As I was hanging clothes in the closet, she ran by me and as she was running, she peed. I am not talking just a little either. It was coming at full force. She didn't say a word. It was like it sneaked up on her and she had NO IDEA what had just happened.

This morning I am taking her to see Dr. Annika. I am crossing my fingers that it is a UTI. She has been on meds for her kidney reflux and I am hoping it is from that.

Bladder control can also be connected to Chiari. I am just hoping it is NOT neurological!!

We'll keep you posted!

Biopsy

Doctor called today with Riley's biopsy report.....it's negative for skin cancer!

Thanks

A BIG thank you to my good friend Debi for the blog makeover!! She did a wonderful job!! I just love it!

A big week ahead of us. On Friday, Keegan and Carson will see Dr I for the first time. He will help manage and keep their chiari malformation under control. Hopefully we will get some answers for Keegan - black fuzzies he has been seeing, his leg pain, headaches, etc...... It should be interesting.

Riley girlfriend, is doing alright. She forgets sometimes that she has an incision on her forehead. I will make the appointment 2 week appointment for her tomorrow.

Cooper, well Cooper is just Cooper. He is hanging tight for me. We'll get to him as soon as I have my bigger "fish" taken care of.


Oh yea, and my kiddos are on spring break this week! YEE HAAW!

Pics of Riley

Riley's pre op pics and post op pics

Riley thinks she looks like Coop!

Home

Finally, after a 2 hour delay, Riley crossed the red line and did just fine. She was a bit scared and did some crying when we had to put her gown on but other than that she did well.
Surgery took just under 1 hour and all went well. She recovered quickly and we headed for home. She will go back in 2 week to have the incision looked at and to find out the results from the biopsy. Crossing our fingers that everything is fine.

I am beat, so I will post pictures tomorrow!

Thans again everyone for all your thoughts and prayers!!

behind

Hi.

We are still waiting for Riley to go back. Dr. is a bit behind.

Crossing the RED line for the 8th time

Off to Milwaukee today. Please keep Riley in your thoughts and prayers.