Friday, October 4, 2013

A Discussion On Genes (and not the comfy, denim kind)

I have been MIA from the blogging world.  I didn't realize how far behind I was until I looked this morning.  I owe Layla a few posts, and I want to do a European Vacation update.  I will probably just make those all into one big lump. 

However, I did want to share information about what's been going on in my life since the summer started.  I haven't said much about anything because there was a lot of information I didn't have, and unknowns about testing, etc. At the beginning of June I had my happy lady doctor appointment. Once again my doc was suggesting genetic testing for breast and ovarian cancers. We had been having this talk for a couple of years, but I wasn't really old enough to really be concerned. (They have all of these equations for family history, age, etc to decide these things.) 

 Anyway, this time we decided to go ahead and do it PROVIDED I get the coverage from insurance.  I am all for being prepared, but the $4000 bill wasn't in our budget. So I waited and waited and WAITED and finally, the very end of June I got the approval from our insurance.  I had already given the blood they needed, they could just actually do the testing now.  So I waited and waited AGAIN, and at the end of July I got the results.  They weren't positive but they weren't negative either.  It appeared that I was negative for the breast/ovarian mutation, but something else popped up and the testing center/my doc didn't know anything about it.

So my doc referred me to an oncologist at the KU Med Cancer Center.  I JUST had that appointment on Wednesday.  (So more waiting.)  I wasn't really ANXIOUS, but by the time I got to the cancer center I was hyped up more than necessary. 

But it was completely fine and normal. and my doc was so unbelievably nice, and well versed in his specialty.  But in laymans terms, not all his medical gobbledygook.  He started this Risk Assessment/Management Program with KU Med 10 years ago or so, and now that's all he does.  So they look at family history and personal health history plus genetic testing if necessary to determine risk.  There is a ridiculous amount of diverse cancers in my family, running on both sides.  KU Med has their own equations and questionnaires to determine if you would qualify for testing, etc.  My appointment was a great discussion on my personal health history, family health history, the world of genetic testing, and risk management.  I greatly appreciated all of the information.

He explained my irregular result from the genetic test.  I kept saying mutation, and he finally said it's not ACTUALLY classified as such.  I have a Favor Polymorphism.  He explained it like this: If you are building a car at the assembly plant, and you have all the blueprints to build the car, and you get to the engine blueprint and it says put the engine in the trunk.  So you do, and go on building the car.  From the outside, the car looks fine, but eventually it won't run. BUT if you have the blueprint for the stereo and it says put a silver knob on it, but instead they put a black knob on it, that's me.  Does the stereo work? Yes. Does the car run? Yes.  Could it cause a problem? Possible. But not necessarily something to worry about.

The Favor Polymorphism that I have was only the 14th of it's kind to show up.  (Thus all the hoopla.)  However, it doesn't really mean anything.  Genetic testing/analysis is still such a young science that there isn't a giant database to compare it with.  So they have seen my kind before, but they don't have much info about it.  It could be a million other people have it, too.  They just don't know.  So basically they have a TON of info about me, but nothing really solid to compare it to.

Enter my Grandma Frankie (paternal grandmother). Gram had breast cancer, a mastectomy, and chemo at 38 (1974).  She is a huge indicator for my genetic testing.  My mom was diagnosed at age 55, and is a factor, but because she was so much older, it's not as pertinent.  This is all about preventative measures and risk.  I will start mammograms probably next year, so I will be taking more steps to be aware.  However, with Gram's early onset, there is information in her busy little body that they want.  So, it's her turn to be tested. My doc wants to see what her genes say.  If she has something there that I don't have, then there really isn't much to worry about.  If there are some similarities, then we keep talking and figuring things out. And for her own well being, there could be ovarian cancer or other mutations that they could find that could help her.

ALL of this to say, it's a lot of information without a lot of solid knowledge.  I feel WAY more educated, and less in the dark.  So that's a huge thing right there.  And I am a HUGE supporter of 'The More We Know.'  So I might never learn anything that helps me or that I ever need, same for Gram.  But in thirty years, I hope Layla isn't doing this, and that breast/ovarian cancer are curable.

So the next step is that Gram will get tested, and then we will go back together to talk with the doctor about the results.  Seeing as it took forever to get the first appointment, I have a feeling it will be awhile. :)

In conclusion?  Know yourself.  Know your body. Know your history and your family's history.  Talk to your doctor.  Do your research.  My results could have just as easily been positive.  Perhaps I wouldn't have gotten cancer at all or maybe I would have been 50.  But I would have KNOWLEDGE and could make educated decisions. I could have chosen preventative measures to hopefully avoid getting those cancers in the future.

I understand all of this is based on my insurance company's decision to approve the testing.  And I am NOT looking to start a fight about government shutdown's, health care, Obamacare, and whatever else someone will pull from this.  HOWEVER, genetic testing is the start of a new wave of cancer prevention.  My insurance looked at my history and said, Yup, we would rather front a 4k bill plus whatever comes after than the possible hundreds of thousands of dollars later in my life should I be diagnosed. And yes, this is specifically only for two cancers. But I hope there are more/will be more tests. I hope people do them. I hope insurance companies cover them, and costs plummet so people can afford them.  It's grandiose thinking in a world where Congress gets a big fat paycheck for failing.  But in thirty years, if Layla has to go through all of this too, then the failure is astronomical and we have lost more than a few thousand dollars.

Below is a blog from a woman that was diagnosed with breast cancer at 31.  It's heartbreaking to read, but the information and financial burdens are staggering.  It's worth your time.


 

Thursday, July 11, 2013

15 months!

I can't believe it's already time for another month birthday.  I think I write that every time, but it goes by so fast!  We went to the doctor yesterday, and she is on the same track she has been.  32 inches tall (90%) and not quite 23 lbs (50%). She grew one inch in two months.  I knew something was up when all of a sudden her shoes stopped fitting, and capri pants turned into shorts too quickly.  She also had to get three shots.  It should have only been two, but since we are leaving the country again, she had to get another MMR.  That's the third one of those.  Apparently, the one before she was 12 months 'didn't count.'  We had a sad night last night.  She ate pizza, and sat on the couch and cried.  It was so sad.

She is still just the best little person.  She says uh oh and wow.  She knows what a cow, a dog, and a cat says.  We went to a farm this last weekend, and she got to feed and pet cows and horses.  She became fast friends with a giant German Shepard who loved her, and a cat who tolerated her. :)

We are just about out of 18 month clothes, length wise.  I am thankful it's summer time.  She is skinny enough to still wear 12 month stuff, and it fits.  So shorts and skirts fit.  Whew. I underestimated my giant child when buying summer clothes.

We are gearing up for vacation.  We are less than two months away from a week in Germany, and two weeks in Greece on the beach.  We are SO excited, and I can't wait for her to see her family again, and meet everyone in Greece.  And for her to see the beach for the first time!  She loves playing in water, so I think she will like it.  I am not looking forward to all the traveling.  But we broke down, and bought her a seat so hopefully that will help.

Here are a few pictures from the last month.  Zwerg, you are the best!  You make our lives so amazing, and we are so happy that you are ours.  We love you!

Her first walking stick

Chatting with Katsy

Happy Fourth of July!

Learning about Sesame Street

My lady 
Playing with Grammie

Big 15 month old girl!

Monday, June 10, 2013

14 months and 1 day

I am a day behind.  We had a busy weekend, and currently the Tiny Tornado is fussing in her crib rather than taking a nap.  So I've got that going for me...which is nice.

She WALKS everywhere and all the time.  She doesn't want to be carried or hold anyone's hand.  If you ask if she wants help, she decidedly shakes her head no and marches on.  It's pretty freaking precious. She thinks she is hilarious.  She loves to tackle and roughhouse while hanging out in our bed.  She loves mulch and mud.  She loves her Baby and gives her hugs and kisses and rocks her.

She is the best little tiny person.  She spent 5 days with Papa by herself while I went to NYC with my mom. They had a BLAST.

Here are a few photos from the last month.  Happy Belated 14 month birthday, Zwerg!

Frozen yogurt face

Loving Papa

Driving!

Happy lady!

Love it

Hanging at the mall

Princess!

My Zwerg

Thursday, May 9, 2013

13 months

13 months seems weird.  At some point I want to stop saying 'months' and just say 'one year and whatever'.

This month has flown by again!  She is almost walking!  She has a baby stroller she loves to push, and it's the cutest thing ever.  I am sure in a few weeks we will have our first steps.

D has been gone this last week.  It's our first time alone in awhile.  We are doing ok, but it's a different hard this time.  Now that she is mobile and all over the place, I feel like we are constantly on the go.  But it's also more fun as she explores and discovers.  However, she has discovered that she has the choice to do the OPPOSITE of what I would like her to do.  We have had some of our first real battles of the wills, and it was harder than I thought it would be.  It was also earlier than I thought it would be.  I was hoping not to deal with this till she was like, you know, thirteen.

Anyway, it's a been another great month!  Zwerg, you are the most fun!  We play, laugh, blow bubbles, play outside, play hide and seek and peekaboo, and so much more!  I can't wait for you to start walking!  We love you!

Hanging in Casey's bed

She can reach the doorknobs.  Yikes! 
At the zoo with Katsy!

Yogurt face

Mad about the snow, and wanting to go outside

Super cool

Bubbles!

Choosing a less than optimal way to dismount the chair

Papa!

Celebrating Katsy

Playing guitar with Mama

More bubbles

My Zwerg!

Wednesday, April 10, 2013

A Forgotten Blog...

***In the midst of all the insanity written about below, I apparently forgot about this post.  And I am sad because I was really passionate about it at the time, and I still am.  Since then, Layla has done MUCH traveling, and will continue to do so.  She got her feet wet early, and I love hauling all of her stuff around so we can keep going places. (Well, not really LOVE, but you know.)

Anyway, I originally wrote this in August when Layla was about four months old.  That seems like such a long time ago, and I guess it really was.  This year she will get some more miles under her belt...Germany, Greece, and Baltimore if we can make it happen.  She sees my family all the time, and knows and loves them.  But it's imperative to me and D that she continue to see, meet, and understand her family and heritage that are still in Europe.  I honestly can not WAIT to take her to Greece.  The family there is HILARIOUS and they will love her to pieces.  Her first view of a large body of water will be the Aegean Sea.  She will taste new food, hear more languages, and experience new cultures.  She might only be 1 1/2 at the time, but she has to start somewhere.

One of my favorite quotes about travel is from St. Augustine - "The world is a book, and those who do not travel read only a page."***


Before Layla was born, D and I had a long talk about putting a moratorium on traveling. This was a hard decision for us. We both love to travel. A lot. D's family lives thousands of miles away. We don't really have a choice there...we have to go so we can see them. However, we had traveled during my entire second trimester. D had been going to ATL one week a month for about a year, and we were both ready for a break. So we decided to be still, have a kid, and figure out how to be parents.

Sure enough she showed up with all of the insanity that a newborn brings. I remember thinking, at one point, that we would never go anywhere again. Babies have so much paraphernalia. I sat around looking at all the stuff thinking there was no possibility that we would pack up all this crap, and go somewhere.  I also enjoyed being at home. Our little family was fun...unless the tiny one was losing her mind. Although, even then, we were still our little team.

But then things settled. D started going to ATL again (not the kind of traveling we like.) And I was getting the itch. The travel bug that used to be calmed with a quick trip to Denver to see my friends and the mountains I love, a drive to Columbia or OKC for the weekend or surprising each other with a few days someplace that we both enjoyed. Fortunately, my genius husband picked up on this. For my birthday we went to Baltimore to see my brother and sister-in-law. I was nervous how a 14 week old would do on the trip, but Layla rocked it. She couldn't have cared less about flying, taking off or landing. She loved meeting her aunt and uncle and four legged cousins. Once we were home, I was so happy that trip went well I was genuinely looking forward to our next one.

We started discussing Christmas in Germany and what that would look like. And then, over the last few months, things just kept coming up. A big one is that D needs to spend more time in ATL. About a year and a half ago we had to have the talk about possibly moving there. It wouldn't have been a permanent thing, but he was needed there for an extended period of time. I wasn't a huge fan. My fam is here, and they are a huge part of our life. We were also getting ready to try to start a family. Obviously, we didn't go but D's trips there did become more frequent. Once again, we are at that place. No, we aren't moving, but we will be spending more time there.  While I'm not looking forward to weeks in a hotel, I would rather be there with him than here without him.  This first trip is shorter; a test of sorts. If it goes well, we will probably go back again for a longer stretch.

Thus, we are about to kick off four months of craziness. Sunday we head to Chicago for a week.  It's a business trip for D, and we are tagging along. Although now its turning into a bit of good time. I'm excited to see folks that I don't get to see very often. Including one of Layla's suitors. :) He is about 18 months old. I hope he is prepared for D's list of requirements. We get home next week, and a few days later D's parents arrive! We are so excited. Although, they are WAY more excited to meet their granddaughter. We will have them for two weeks of fun and hilarity. They head out, and three weeks later we head to ATL for three weeks. We are home for three weeks, then back to ATL for a week, and from there Germany for three weeks. We won't be home till after the new year.

As I think about all of that now, it dawns on me that we are stupid. Or something close to it. Layla will be five months old on Sunday. (She will get her own post for that.) And we are going to haul her and her stuff all over creation, stick her in hotels, her car seat, planes, strollers, new cultures, communities, with new people and places and food. But, man, I really can't wait. It will be hard and tiring, with delays and frustrations, but she gets to go. She won't remember it, at least not this trip. But we are going to get her started. I don't want her to be afraid of any of it. I want her to go with an open mind. To see new places, experience new cultures, and understand that our little world is nothing compared to what is out there for her to see. I can't physically imagine her leaving EVER right now, but when that time comes I want her to go where she is called. Be it Kansas City, LA, Russia, Brazil, wherever. I have my husband because his parents taught him to have an open mind and to follow his dreams. He was horrible at English, had to beat hundreds of other candidates to get one of five spots to attend college in the States, and he worked hard to find a job that would bring him back. Through all of that, his parents supported him. He is the youngest of four, and I can't imagine how hard it is to have him so far away, with a daughter-in-law who speaks broken German, and now a new granddaughter that they haven't met yet. I want to be that solid support. I want her to see it and taste it and decide for herself where she should be.

Lofty thoughts for a five month old that I can barely handle leaving for just a few hours. But we will get there. Assuming we survive the next four months...

Tuesday, April 9, 2013

Happy 1st Birthday, Layla!


***WARNING*** Long, sappy Mom post ahead. It might be rambly, too.

Daniel and I always knew we wanted kids.  There was always a debate about how many, but we figured we would start with at least one, and see how we all did.  When we decided it was time, I was nervous. I had no reason to think we would have any problems, but as many moms and women who want to be moms know, the anxiety that can come with pregnancy and all that surrounds it is ridiculous.  We were so so lucky.  Pregnant in the first month.  A perfectly normal pregnancy with the typical symptoms and such.  And a great birth experience.  I am so unbelievably grateful for how it all went.  It's weird to think how worried I was about everything.  God, I am sure, was just laughing and laughing while He handled everything.

One year ago today, I was in the midst of labor.  Long, painful, unmedicated, induced labor. I, of course, chose unmedicated.  But that's where I was.  A long night, a long morning, a long afternoon.  I was fine with the contractions. I was fine with the pain.  I was even fine with only getting to eat the popsicles that my lovely nurse was sneaking to me.  I was not fine, however, with the fact that our tiny little person didn't want to come out.  On Monday afternoon (April 9, 2012), after 18 hours of labor, I finally asked for an epidural when I still wasn't making any progress.  And two hours later, when she still wasn't on her way out, I was getting worried.  I had no problems with a C-section.  They exist for exactly such situations, and I trusted our doctor 100%.  I was worried about WHY I would need one.  She wasn't budging.  Not a centimeter.  Her heart rate was starting to go up and down, and our doctor had been suggesting surgery for a couple of hours.  Was she ok?  Was she stuck? Did she have the cord around her somehow?  Millions of these questions were flying through my head.

It didn't take long to make the decision to move ahead with surgery.  And thank the dear Lord for modern medicine.  Less than fifteen minutes later I was in the operating room, and fifteen minutes after that, our precious little lady was born at 5:54pm.  She did have the cord around her neck three times.  She wasn't ever going to come out on her own.  And because of the concern for her inhaling meconium, they tried to keep her from crying until she could be cleaned up, and checked out.  The silence was deafening. I couldn't see her.  I could just see Daniel running around like a crazy person.

And then she cried.  Much relief and many tears. I still couldn't see her, but Daniel was taking pictures and telling me how beautiful she was.  We hadn't fully decided on a name, so I kept asking if she looked like a Layla.  D got the final say on that, and so there she was.  Layla Kathleen Erika Grammatikos.  The poor kid won't ever be able to fit her name on anything, but we liked it so she is stuck with it.

And now here I am writing about Layla's first birthday!  This year has flown by.  Even in the first few months that seemed so hard and long...now they seem like the blink of an eye. It has been the most amazing year.  Laughter, tears, sleepless nights, hugs, love, and so much more.  I did not know what to expect when this little thing came into our world.  But she is so perfect.  She is sweet, and funny.  She loves to cheer for herself and to find her Papa when she can't see him.  She claps and 'raises the roof' when it's bath time.  She blows kisses and says 'please', 'thank you', and 'more'.  She dances ALL THE TIME, and her booty shaking just kills me.  She is so smart, and is a quick learner.  (This could be prove to be rough for us as she learns to walk, and takes over the house even more.) She LOVES her grandparents and the rest of the family.  She Skypes with D's family every week, and waves and chats with them.  She pulls up on everything, and holds on to things so she can walk.  I don't think it will be long before she is running around.  She loves to wave to everyone, no matter where we are.  An extrovert, I think. :) She doesn't say much yet, but she listens and obeys, and understands what I am saying to her.  She responds with her sign language, and it's the cutest thing ever.

Daniel and I are closer than we could ever have been without her.  I can't imagine only being the two of us, instead of the three of us.  I didn't know you love a tiny thing so much, but sure enough, it's amazing.

Zwerg, you are the best thing that ever happened to us!  You make our lives so much brighter!  You love your Papa so much, and give him the best kisses and pats.  And every morning when I come to get you out of bed, we play hide and seek, and you laugh and laugh. It makes my day.  We are so thankful that God blessed us with you.  I can't wait for this next year when you will learn even more, and be such a fun little person! We love you!  Alles Gut zum Gebertstag, Layla!

Reading with Papa


Enjoying the sunshine

My precious lady

Silly girl!

Almost one!

Visiting Papa at work


What time is it? BATH TIME

Heartbreaker

Opening presents!
My little one year old!

Tuesday, March 12, 2013

11 months!

Holy cow!  11 months!  One year is right around the corner.  I missed her 11 month birthday.  We were in Denver, and she was spending the weekend with Papa Dos and Oma Katsy.  This was our first weekend away, and her first time to spend a few days with someone besides us.  She did GREAT.  No problems, great sleeping, lots of fun with the family.  It was so nice to not worry about her.  In fact, when I got home yesterday, my dad left and I was getting her up from her nap. She looked confused, and kept looking around the house for Papa Dos.  It was kind of funny.  She got pretty excited after she figured out it was really me, and when Papa got home from work.  It makes me feel good that she does well without us. We have another wedding to go this summer, and she will be just fine then, also.

Milestones!  She pulls up on EVERYTHING now.  We have not been doing a great job at baby proofing.  That is going to have to change.  She really understands what we are saying now.  We can ask her things, and she will say please or shake her head no.  I can ask her to 'Show Mama' and she will point at what she wants.  She loves following us around, and 'finding us.' She loves the dishwasher and opening the cabinets.  We had our first cabinet casualty.  A Starbucks mug died at the hands of the tiny mover. So I finally got the cabinet lock things, but they have yet to be installed.  We had our first real sickness.  She picked up a nasty cold, and a bad cough.  It was so sad.  I don't like sick babies.  She is finally almost done with it, but D and I are still moving through it.  A family that cares is a family that shares.  Her appetite is back, and she eats everything! Noodles, toast, avocados, anything that we are eating.  It's nice to see her scarf stuff down after not really eating for a month.

And we have entered the boo boo stage.  She tumbles over, face plants, slips, and on and on and on.  Fortunately, after the initial crying, she doesn't really care.  She loves to ride on her car, and read books.  She puts her hands out when asking 'Where?' and ALMOST says 'all done.' No real words yet.  She KIND OF gets Mama, but not totally.  I am not worried about it.  It's not uncommon for kid in bilingual homes to speak later.  And she understands and responds to what we are saying to her.  We are all good.

Her birthday party is in the works.  I am excited to see our family celebrate her, and watch her smash her little face into a sugary mess of a cake. She already has a couple of cute outfits, so there will be many pictures.  And there will be tiny people here for her to play with.  I can't wait!

Reading with Papa

Scaring Mama

Looking at her first real snow!

So....happy 11 months to our little person.  You are the best Zwerg in the world!!