Saturday, July 30, 2011

This is for them

My email in-box has been flooded with requests for any information I have on The Center for Endometriosis Care. I have been completely overwhelmed by the moms, sisters and friends writing to me on behalf of someone in their lives that is suffering from endo. And I have been saddened by the young women writing to me, some of them suicidal, that have cried out to me for help because they have this dreaded disease.

THIS IS FOR THEM

It's been almost 2 weeks since Allie's surgery.

*If you don't know her story, you might want to check out a couple of posts here and here*

Of course, it's still much too early to know the outcome of the surgery...... time WILL tell.

Right now, she is still taking prescription drugs to deal with the pain of the surgery. They did a lot of digging around in there, moving internal organs, cutting on them.

She's sore.

But she is feeling better and better each day.

While we were still in Atlanta, I was able to pick up a bunch of information from Allie's doctor to bring home with me. The information I was able to gain just blows my mind....why is it not in every OB/GYN's office across the country?!

I have information entitled Endometriosis and Abnormal Bleeding, Endometriosis in Teenagers, and Is My Endometriosis Coming Back?

But by far, the most important piece of paper I have is simply titled The Center for Endometriosis Care.

I would love to scan and copy the entire thing for all of you out there desperately in need of help, but let me just give you the intro for now:

The Center for Endometriosis Care (CEC) is formed around four principles:

*recognizing subtle disease in all its manifestations
*removing all endometriosis while preserving a woman's organs
*performing pathological examination on all excised tissue
*treating women with respect as partners in healthcare

And I am here to tell you FIRST-HAND, they live up to this.....and more!

When I originally found the CEC last spring, I wasn't sure what to expect, but I felt it was our last hope. After putting us through the ringer, our insurance company finally gave us the go-ahead to receive treatment at the center in Atlanta at in-network rates. And at $15,000 just for the doctor's fee alone, it's not cheap if you're not in-network. Once insurance agreed to cover it due to lack of any resources in our area, we ended up paying about $1500 for the doctor's fees (that's after our family deductible was met for the year) and about the same for the hospital fees. We are still waiting to receive bills for anesthesia, labs, etc. Of course, we would pay anything to take this pain away from Allie, so I'm not complaining, but I want you to have a realistic idea of the costs. I'm sure it will be different for everyone.

In order to set up surgery for Allie, I had to get ALL of her medical records gathered up and fill out bunches of forms from the CEC. I put together a whole packet for their doctors to review and mailed it to them. We heard back from one of the two doctors at the center fairly quickly and scheduled surgery at that point. We had to schedule it around flights and recovery time, so we planned a Monday surgery because they were able to do a pre-op appointment at their office early that morning and do surgery later that same day.... perfect for us because we were flying and staying in a hotel, so we wanted to keep the trip as short as possible, and we had to plan for recovery after the surgery.

The UGLY part.....I'm not gonna lie, probably the worst part of the surgery was the bowel prep the day before. Beginning Sunday (which was also our travel day), Allie was on a liquid-only diet AND she had to take medications aimed at completely clearing her bowels.

COMPLETELY

In other words.... dulcolax tablets followed by an ENTIRE bottle of miralax powder mixed in with a gallon of gatorade that had to be drunk over a two-hour period, followed by more dulcolax tablets and finally an enima performed the morning of the surgery.

Sorry, but it's the ugly truth.

We had to be at the doctor's office Monday morning at 7:30. It was our first time meeting the doctor. We started out in his office where we talked about Allie's history and the procedure was explained. I was absolutely floored by the questions the doctor asked. Not only did he seem to understand exactly what Allie had been going through (and that was a first for us!), but he knew exactly where the pain would probably be located and other issues that might be going on based on her answers!

Not only did he believe us, he seemed to know what we were going to say BEFORE WE SAID IT!!!!!!!!!

Blood was drawn, urine collected, and then an exam of Allie, to include a vaginal ultrasound.

We left the doctor and went straight to the hospital. Allie was checked in and prepped in the same-day surgery center. Just before her scheduled surgery, her doctor came into the room. He made sure we were both doing well, and then......

he prayed.

He took my baby's hand and he prayed. Words that I needed to hear. Words that Allie needed to hear.

He asked that God be in control.

I cried.

I thanked him and she was wheeled away.

Let me stop here for a minute. If you have any doubt that you are doing the right thing, and then you have a doctor that you didn't even know was a christian and you just met for the first time stand there and pray openly and out loud in front of you without any hesitation at all.......

well.....

there goes that doubt.

The surgery took about two hours. The first part of the surgery was exploratory. They did what was called a hysteroscopy to explore Allie's uterus. The main part of the surgery involved locating the endo and cutting it out. Remember..... this is what's different about this clinic. They don't just burn the top layer off, they actually cut the spots out.

Oh, there's so much information I want to relay, but it's so tough to write it all down. I feel as though I could write a book about our experience!

When the surgery was over, our doctor came out and talked to us. He brought lots of pictures. Pictures of the endo inside Allie.

She was riddled with endometriosis.......STAGE 3 out of 4.

It was on her ovaries, it was on her bowel (which was the cause of her constant diarrhea).

It was no wonder she had been in so much pain.

He cut out most of it. There were a couple of spots on her ovaries that he had to burn off instead- he wanted to be more conservative there to cause as little scar tissue as possible and preserve her ovaries. Her ovaries were stuck to the walls of her uterus by endo and had to be cut away- they were then wrapped with a special product to help keep them from sticking again while they heal (it will disolve on its own).

I'm sure I'm getting some of this wrong, but this is the best I can do....there's so much to take in!

I talked to him about the endo returning. Her prognosis, according to him, is that she has only a 5% chance of recurrence. He bases this on his thought that endo, once cut out, will not return. The belief by the specially trained doctors at the CEC is that women are born with endo. The other theory is that there is some sort of leak that allows the endo to flow outside of the area it should be in each month when a woman cycles. If you believe that one is born with it and it is able to grow each month, then the theory that cutting it out will get rid of it works because the source of it is gone and can't return. And they have so many cases of success to back up their theory. It makes sense to me because Allie started off having such severe pain with her cycles at age 13! It's been growing in there all along. It also makes sense because there are so many young girls with painful periods that aren't diagnosed until they get older and are trying to have babies.

Of course, only time will truly tell, but we have nothing but hope!

Again, I have all the literature, and I would be more than happy to talk to anyone about it if you want more info! I would love to copy what I have and mail it to you! Please, if you have questions, continue to email me and I will do everything that I can to help!

We feel like Allie has been saved.

It's that simple.

So this, well, this is for them.

All the women out there still suffering without hope.

No more.

I don't know what my role in all of this will be, but there is no doubt in my mind that we have been through this with a bigger purpose in mind. God has plans for Allie, and I think he has plans for me. I hope that I will be used to help other women out there come back from the brink.

We've been there...... we know.

There is HOPE.


HOPE for them.

*please, please leave me questions and comments on this post! It's important for other's to know that you are out there. There are so many of you! We have to get this information out there to help everyone who is suffering. Get the facts!

Here is the Center for Endometriosis website: www.centerforendo.com


Wednesday, July 27, 2011

State of Affairs

Sweet peanut butter & cinnamon-sugar toast.

Two different things I've made for my kids today that my mom used to make for me..... things that I haven't made in years (probably since the girls were little). Honestly, I forgot about them! But now, as I stand here munching on a graham cracker square topped with pure heaven (that would be the sweet peanut butter), I wonder how on earth I could have possibly put them out of my mind!

*In case you're curious.... the sweet peanut butter consists of peanut butter, powdered sugar and a splash of milk! It's lovely on top of graham crackers, pretzels, apples.... you name it :D
The toast is just buttered toast sprinkled with cinnamon & sugar!

The house......complete!
I returned home to no more men showing off their tattoos or spending 20 minutes in my bathroom. The damage has been completely erased. The wood floors have been stripped and restained a darker color which I LOVE. The walls and ceilings all patched and repainted. The tile replaced. New carpet. Honestly, the house is just like new, the water damage a distant memory. In fact, not only has all the damage been repaired, but a wonderful cleaning crew was brought in to completely clean all 6500 sq ft of our home, and it literally sparkles! I'm feeling a little spoiled these days ;-)

HOT! It's too hot for the Gang to go outside for more than 20 minutes at a time. Over 100 degrees for days on end now. It's so hot that even the neighborhood pool provides little relief! So they wander aimlessly about the house, bickering and moaning about having nothing to do. But with school starting exactly 3 weeks from today, they won't be bored for long! Seems as though an old saying might be appropriate here.....be careful what you wish for.......!

Allie. Let me preface this by saying that time will tell, but at this point, things seem to be going well for Allie. Her stitches are healing (she had 3 incisions), her pain has lessened, she is able to get around and care for herself.....oh, and she is looking forward to her future! I plan to write a post soon with all the details of her surgery and her prognosis, but let me tell you that we feel as though the future is bright....God has answered our prayers!

Pinterest.

Heard of it?!

I. Am. Hooked.

Or pinned ;-)

I added a "follow" button to my right side-bar if you want to follow me on Pinterest.

*WARNING.... you WILL become pinned too!!

Diet vanilla coke & iced skinny vanilla latte.....my current drinks of choice.

The candle burning in my kitchen is mulberry and mandarin.

There are two jugs of iced coffee sitting in my second refrigerator..... courtesy of my mom and The Pioneer Woman! Had some this morning with milk and vanilla. Although delicious, it's NOT decaf......oops. Needless to say, I was feeling a bit loopy after drinking it. Emily will be drinking the rest ;-)

Allie is wearing funky, striped, mismatched socks and laughing like an evil villain. It's good to have her back!

The little kids are doing a project in the office.....thanks Sophie- I owe you one!!

And now Emily is hooked on Pinterest! I love that girl! She's a coffee-drinking, list-making, on-time-arriving, message-tweeting, sweet-treat-baking mini-me...... except she's taller :D

Hubby took me out to dinner last night at California Pizza Kitchen. Good food, great company! Then he took me to Coldstone Creamery.

Both completely unexpected!

Did I mention I was feeling a bit spoiled these days?!

My mom is gone.

She left yesterday after being with us for almost 2 weeks and going with Allie & me to Atlanta last week for Allie's surgery. We miss her already!

Bills....paid.

School registration paperwork.....complete.

Hubby now has a Twitter account!

Hope you are all surviving summer :D









Tuesday, July 19, 2011

Missing my Gang

I'm spending the afternoon sitting in a hotel room in Atlanta, far from home. Caleb & Allie are napping, so I decided to upload some of the vacation pictures that I haven't posted!

We spent four days at the beach, and we had a fabulous time! Caleb loved the ocean :D


Matthew got to pick up his first crab!

Noah too :D

The busy days made for good naps.....

Even Jacob fell asleep on the sand!

The kids did some body-boarding..... so did their dad!




The boys had a great time on the beach- we were lucky to be staying right on it so we could play in the sand any time we wanted!



We had dinner one night at Brown's- a really fabulous seafood restaurant where we were able to eat out on the deck and watch the sun set :D

Some of us got to pick out our own lobster for dinner, but Matthew just wanted to play with the leftovers ;-)

Allie & Jacob!

I've never been away from Jacob & I only spent a couple days away from Matthew, so it was tough to leave them this time! We don't go home until Thursday, but I'm excited to get to have lunch tomorrow with a friend from loooooooooong ago! Actually, a best friend of mine in 6th and 7th grades when my family lived in the Netherlands! Not only that, but my first-born is named after her!!! Anyway, she lives here in Atlanta with her husband and 3 beautiful daughters, and I've only seen her a couple of times in recent years, so I'm SUPER excited to get to see her tomorrow!!!!! It will definitely make me feel better since I'm really missing my kiddos!

Thanks for your continued prayers for Allie. She's in LOTS of pain, but we're hopeful that this pain will be the last of her suffering for a very long time!

Monday, July 18, 2011

Surgery update

Hey everyone! I wanted to post a quick update for those who don't follow me on Facebook or Twitter!

Allie is out of surgery and resting at the hospital. They allow her to stay as an out-patient for 23 hours, so she will spend the night there, and we will bring her back to the hotel tomorrow.

The surgery went well. I was so thankful when her doctor prayed over her as they were preparing to wheel her down to surgery. I loved his words and it was exactly what Allie & I needed to hear- so nice to have a doctor who isn't afraid to show his faith to the world!!!

Post-surgery report:
~ lots of endometriosis.....no surprise!
~several organs fused together (ovaries and bowel)
~ doctor thinks she will only have a 5% chance of recurrence (due to a very small area that he couldn't cut out on her ovary and had to burn instead to avoid tissue damage)
~doctor believes she was born with disease and that it won't continue to leak into uterus or surrounding areas once it's been cut out- if it's gone it can't spread and it won't grow back!
There's so much to take in and be thankful for, but, bottom line, we have more hope than we've EVER had....

PRAISE GOD!

THANKS so much to all of you for your kind words, thoughts and prayers- they worked!!!!!!

Sunday, July 17, 2011

Chewed

To the quick.

My nails that is.

They are chewed to the quick.

ALL ten of them.

I have a nasty habit of biting my nails. For some reason I just can't let them grow. I get them to about the same length every time, and then, one by one, over a couple of days, I slowly nibble them away. It always starts with one nail on one hand, then another, then another, until that hand is chewed. Then I move on to the second hand. I try not to chew them down too far. I don't want them to look bad or hurt, I just get satisfaction from chewing on them and use my teeth as my nail clippers I guess.

But today, well, today my nails are chewed all the way down to the quick. I think if I chewed them any shorter they would bleed.

The direct result of stress.

Tomorrow is the big day.

We are to be at the doctor's office by 7:30a.m.

That would be the doctor that we've never met.

The doctor that will be operating on my first-born in just a few short hours, performing a little-known procedure that will have a HUGE impact on the life of my child.

Chewed.

Please, please say a special prayer for Allie when you read this. She is scheduled for surgery at 11:00a.m. (east coast), Monday, and we will be staying in Atlanta until Thursday to begin her recovery. She has been on a "liquid-only" diet all day today, as well as special meds to prepare her body for surgery- not nice. She is feeling sick and nervous and recovery will be very tough. We so cherish all the kind notes on Twitter and Facebook- thank you all so much for remembering us during this time!!


Wednesday, July 13, 2011

Just words....

Strength.

Courage.

Honor.

Dedication.

Valor.

Country.

Freedom....

isn't.....

FREE.

The above pictures were all taken from our visit to Arlington National Cemetery. It was one of the two places on our visit to Washington D.C. where I found myself tearing up.....the other was the Holocaust Museum.

May God Bless our troops.


Thursday, July 7, 2011

Niagara Falls

On our way to the beach from Chicago, we made a brief stop at Niagara Falls! I had been there as a child, but my husband and kiddos had never been..... it was SO worth the stop!!!

We got in fairly late, but we were able to make it over to the falls from our hotel the night we arrived and got to see the falls all lit up- WOW!

The next morning, we got up early and headed over to get in line to get tickets to ride the boat under the falls......The Maid of the Mist. It was incredibly packed with people from all over the world (not to mention the fact that it was a holiday weekend)! Knowing that we still had 9 hours of driving ahead of us that day to make it to the New England coast, we were happy to make it onto the very first boat of the day! We were all given ponchos....





Caleb was not too thrilled with his :(


We got SOAKED! After seeing the American side of the falls, we headed down to the bottom of the boat to get an incredible view of the Canadian side up close and personal!

Here's a picture as we began to pull away from the falls, but the boat sat within a few feet of the base for several minutes!!!

After the boat ride, we were able to hike up beside the falls! Incredible!

And since we were on the first boat of the day, we were able to hike the trail before anyone else was on it!



At the very top, we were so close to the falls, that we could almost reach out and touch the water!


Here's me with all the kids (sadly, Allie was unable to make it due to her medical situation and she stayed in the hotel room- she was greatly missed!)....

Actually, I just noticed that Emily's not in the shot either- she must have been busy snapping away with her own camera ;-) Zack got this shot of a double rainbow over the falls!

It was such a great stop for us! We only wish we had had more time there- we easily could have spent the day :D


Wednesday, July 6, 2011

Chicago in a day!

Well, we did it....

We had a wonderful walking tour of Chicago.... all in one day!

Here's some of what we saw..... The Bean.....



Caleb spent much of the day in his stroller, but he was so good!



These fountains were so funny....and a little weird! The faces on the screen kept changing and then the person would pucker up.....

and water would shoot out of his or her mouth! There was a second screen directly across from this one with another person doing the same thing :D They were "spitting" water at each other!


We did LOTS of walking.....miles and miles of walking ;-)

A streetcar named NOAH :D
(If you look close you can see "Noah" on the front of the car!)

Smile Sophie :D

Allie "posing" at Buckingham Fountain!

The whole Gang (including me!) at the fountain!

Horsin' around with dad!!

We were so lucky with the weather- it threatened rain much of the day, but it never actually did, and that kept the temps cooler!

Walking out along Lake Michigan..... gorgeous!

The fabulous Navy Pier!!!

We had enough of our own kids to finish off the circle :D

My dear friend Mimi convinced me to ride the ferris wheel at Navy Pier.... I hate ferris wheels and am not fond of heights, but I did it for her ;-)

Emily takes after me....only she's even more afraid of heights! I was very impressed that she decided to join us on the big wheel, even if her hands were shaking like crazy when she got off!

The boys LOVED it!

This is Jacob after a long, long day of sight-seeing....

And here's the baby zonked out on our bed on the 22nd floor of an amazing apartment building!

We had a fabulous trip! Our next stop was Niagara Falls..... pics up tomorrow!!

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