My Laura- Why the obscure diseases that no one ever gets matter

First I will share her facebook status, also I'm writing this after not being able to sleep so expect lots of run ons and spelling errors, along with comma misuse.

Countdown to My Birthday: An Explanation

Those who know me know I was not expected to live until today. When I was 10 I got really sick and by my 11th birthday the doctors did not expect me to see the coming summer; but I did. With the help of Love, faith, and science, I defied the odds. I have lived over double my life expectancy and birthdays are my yearly reminder of this blessed fact. I am 25 in 4 days. There were multiple times I thought to never see this week, but I am. Here and now, I am living and experiencing this time. So in celebration of life, I would like to share things with you that I have lived since I was diagnosed. Since I was supposed to die. Since I defied the odds and chose to live my life in sweet abandon, recognizing fully that I easily could have died time and time again over the past 14 years, and finding amazing freedom in that fact. Come, partake. I would like to share my life with you.


This next part is from my part of the story this was in 4th grade and I'm writing what I can recall so there may be inconsistencies but Laura can correct them if they need to be fixed.

Sunday school was the place at church where I felt most awkard for some unfathomable reason they divided us up alphabetically this made it so the other 2 girls in my grade were in another class while I was left in a class that was almost entirely boys I think there was one other girl in it but we were never close. Then came the wonderful day when a new girl came to church and she came to our wednesday night kid's choir things. I was in heaven!!! Her last name started with a K so naturally that put her right with me in the M's. It was awesome I finally had another girl in this class. Then one day she vanished and wasn't around anymore I didn't understand why. I do not remember ever asking my mom about it but I remember being sad that she wasn't there. Laura was so sweet and I missed not getting to play with her and have someone to sit with in class.

I remember making her a get well card and this other girl wrote in really big letters on it and I was all annoyed about it, but I don't remember why we were told we were making the card. One day she showed back up!!!!! I was overjoyed that my friend had returned. She looked a little different she was apparently taking lots of Cortisol but I instantly recognized her and immediately staked out a seat next to her. I remember the classroom this was in on the second floor of SACC, and I think it was on a wednesday night.


Laura
I had just (within the year) moved to a new town when I got sick. Being an 11 year old in a relatively new place, without history and without the friends I had grown up with, I felt a distinct sense of displacement. Of feeling like I didn't belong and did not have a "place" in that world, outside my family. Then one Sunday I went to my 4th grade Sunday school class and the black haired girl I usually sat by asked me where I had been all those months. She told me that she had worried about me, wondered if I was okay, and that she had missed me. At that moment, I felt loved, wanted, and important to someone. Her missing me, of remembering me, has lived on in my life and helped mold the value I place in remembering others and being remembered. She was my first friend in Lexington and has remained my friend to this day. She is the only one I really allow to mother me (I got a text last month about wearing sunscreen) and she will one day be my surrogate ;) I call her when I need to cry and when I want to share joy. She asked me if I approved of her boyfriend and called me 10 minutes after she got engaged. I was the Maid of Honor in her wedding, and her daughter looks just like me. KD changed my life forever and I love her. ♥ Friends for 14 years ♥ — in KY.

Me again:

Laura was told and her family was made aware that her days were limited I was aware after she came back that she was sick and had some disease but I never really understood it. As we grew older I learned that she was one of only two children in the entire country diagnosed with this horrible disease. At the Children's hospital they didn't know what was wrong with her. (This is the part of the story that I am very fuzzy about maybe Laura can fill it in). Someone must have figured it out though her disease was characteristically only found in people over the age of 60 at this time but some Dr. did figure out what she had and gave her the appropriate treatment. Looking back now I am in awe of how normal we treated Laura it made no difference to any of us that she had this illness. I hated that she was sick, but she was always just my Laura to me. She was hilarious in the wintertimes she always wore light jackets when I had on a humongous coat. Laura also has this obsession with shawls and wraps and I've started carrying one around with me now. Everytime I use it I think of her. She loved them back then as well.

I remember the year Laura's feet randomly broke out in all these horrible and terrible sores and it hurt her feet a lot. I remember the year she had to walk around with a PICC line in, and she was so upset that she wasn't allowed to play football with her brother outside. I remember her explaining what it was like to be homeschooled and how she convinced me that not all homeschoolers are crazy. I remember the year she wasn't allowed to talk for a month or two. The big thing here is that Laura has the most amazing voice in the world to listen to, and she was constantly singing. It was a torture for her not to be allowed to talk. i think she had to get her trachea stretched or something along those lines. However, Laura had a great solution she continued right along with signing everything she wanted to say. We understood maybe 2 percent of this, but we loved her anyways.

I remember Laura explaing that when it was your week to do laundry that you did your best to make sure there were very few dirty clothes around that week.

We were in the same small group all throughout middleschool and part of high school there were so many hours of bonding and eating cookie dough at our small group leader's house. We had campouts, sleepovers, church trips, and visits from the chinese lady at 2 in the morning. We played pranks and teased each other but our group of friends loved every moment of it, for the most part. Other classes in our church would get into fights with each other and say all sorts of mean things, not ours. Our class had a Laura. Laura hated being placed on a pedastal and I do not think it was a nice thing to do either. In some ways I think Laura brings out the good in us because we know that each and every second must be valued and treasured. She forced us all to agree to a pack of no arguing on one spring break trip, not the we really had it planned but she brought it to the forefront and made sure everyone would stay friends.

We have spent every single spring break together since 7th grade with the exception of the year when Alice was born so apparently her master plan worked. Every trip we tried to room together beacuse we both had to sleep a bunch in order to function the next morning.

I remember when her dad got a job in the south far away and she was sad that he was gone so much. I remember Laura and her family moving away and crying when it happened I was so terrified that I'd lost my best friend forever. I remember her coming back for a random trip to Kentucky and I spotted her from the end of the hallway, ran to her, jumped into her arms and burst into tears because I was so happy and surprised to see her.

I remember telling her about Elliott and how I thought I was in love. I took him to Florida on a spring break trip along with my dad and step-mom, we met up with Laura and were able to go hang out at Panama City Beach. This was a hilarious experience for us since none of us drank. We did enjoy watching the shenanigans of the others from the safety of our hotel balcony. I remember the long moonlit walks on the beach with Laura. I remember bearing our souls to each other. I remember wanting to make sure she approved of Elliott before I could decide how I truly felt about him.

I remember Laura finding blood where it shouldn't be and hiding it for fear of what it was. I remember praying desperately for her to disease to not come back. I remember when I learned that every time they tried to stop the medicine that Laura's body did exactly the opposite of what they wanted to happen.

I remember her coming back to KY for a visit when I first got pregnant she was so excited about getting to meet my little one. She came up after Alice was about a month old just to get to know her. The three of us cuddled up on the couch for hours on end just staring into the face of a sleeping baby. Laura helped me clip her fingernails, give her baths, and venture out to visit my doctor for the first time. I remember Laura having to take her medicine (chemo?) one of the days she was visiting and how sick it made her feel. I carefully passed her my newborn and she placed Alice on her chest and they were both able to drift off into a blissful nap. I being the paranoid new mom watched carefully to make sure there was no rolling happening and that Alice was breathing the whole time.

I remember asking Laura to sing in my wedding, and finding out that her voice wasn't able to make it that day. I remember the surprise Christams visits and visiting Laura at her Grandma's house. I remember learning about the effects of her medication on eggs and how one of her doctor's had calouslly asked her, as he entered the room. "you harvested some eggs before all this right?". I am still furious about whoever he was and I make it a point to share with some of my classmates one of the things to never open the patient interview with. I remember learning that Laura could probably never have a child since her body tries to kill her everytime her meds are stopped. I offered to carry one for her in the distant future if she ever decided she wished to go that route. I remember another friend of hers telling her the exact same thing.

Here is the point of this entire story I remember all of these amazing and fantastic things about my Laura, but even more I have the future to look forward to with her in it. I know to treasure every moment I get to spend with her. I get to do this because someone made the right diagnosis. Her disease has no cure that I'm aware of but she is ALIVE and LIVING. She lives life to its fullest and seizes each and everyday. People always talk about how they want to wait x number of years to do something be it go back to school, start a family, get married, etc. Laura has taught me more than anything that you have no idea what life is going to throw at you. Carpe Diem

Birthday Weekend:)

I had a great birthday weekend.  I got to go to one of my friend's weddings, and another friend from high school church did some amazing photography of baby Alice.  I've only gotten to see 7 or 8 of them so far, but they are all wonderful.  It's something I would never be able to do on my own, I'm amazed at her skill, and what she is able to capture with her camera.  (This was my birthday present from my dad this year).  My mom is making me a wet bag (for the diapers), and some soil for the tomato plants I'm trying to grow, I'm hoping they don't drown in the Monsoon going on outside.  I can't wait to post the pictures, but it'll be a little while more I think.  Tomorrow is my orientation for an externship I'm doing, I'm going to have to take Alice with me, b/c Elliott still hasn't worked out with his work whether or not he is allowed to use the day care center.

I'm starting to miss having Kasi around, i'd gotten used to having one of my girl friends around all of the time, and it'd be nice to hang out with her when I'm not all stressed out.  All of my high school church friends and I are getting together to go to the lake this weekend, I haven't been together with them all since high school!  I can't wait.

A post about Cloth:)

This is the vanilla, snap diaper

The butternut ?  I can't remember it's name, but I love its bright color, I looked it up, it's the mandarin

This is my favorite diaper of all, the wildflower! (I'm pretty sure that's its name)

Elliott and I decided when we first got pregnant that we would be cloth diapering our LO.  We do not have a ton of extra cash lying around, and it doesn't add excess waste to our landfills.  The search began for the perfect diaper.  We eventually narrowed it down to choosing between bumgenius and grobaby (grovia now).  Elliott loved the AI2 design, he thought it was silly and wasteful to wash a shell everytime she just peed in the diaper, aka, he didn't want the extra laundry. 

I realized while going through my pictures that I have hardly any of her in her fluffy adorableness.  This situation will be remedied once I have recovered from the post final coma that I have been in.  We just got some of the AIOs after the latest sale, and I am in love with them!!!!  I'm hoping that the daycare she will have to go to next year will use them, but we will see.  I don't want to have to pay for diapers in addition to the expenses of daycare. 

Kasi likes our cloth too:)  (She's our nanny if you are unaware).  I believe her favorite diapers are the wildflower and the AIOs (they are so easy and trim to use!).  We use the AIO and the vanilla snap for our nighttime diaper, we haven't had any leaks in a few weeks, and she stays in it for about 12 hours.  My smart little baby can take off the velcro and the disposables, let's just say it's not what you want to wake up to in the middle of the night.

With our skinny baby the excess bulk of her cloth makes her clothes actually stay on her body, when she wears disposables (my mom prefers them, I'm working on her though, hopefully she won't buy more once she runs out of her current box), her pants have to be rolled to fit.  Alice had actually moved to the second snap in the grobaby diapers, but she is back to the smallest size on both the grobaby, and our newer grovia diapers.  I think she is thinning out as she walks more.  She has some pockets that are much bulkier though, and they give her this huge fluffy bum, which I love to death, but I really like how trim her grovias are.  I easily see these diapers making it through potty training, and another LO, since she hasn't even moved up to the second snap now.

I will say if I had it to do again, I would have only gotten snaps, those diapers look like new still, while the velcro ones kinda' look picked over...  When we bought them, I don't think the pretty colors were available in snap form though.  I've also discovered Grovia has tons of sales throughout the year, and I could have stocked up more during some of them and had more of the adorable prints that are now available.  I'm still stalking the airplane diaper, maybe someday I can convince Elliott of the need for it..

I think I have an "Easy Baby"

Currently Alice is running back and forth between our bedroom and her room.  Her room is currently set up as my office, both are very baby proofed, so I know I don't have to worry until she starts being quiet.  She is singing though, so I know whe isn't doing something that requires a lot of concentration.  Burbur just ran in here with a shoe, Alice was fast on her heels to get it back.    I love watching her play and grow into such a smart, sweet little one.   

She is letting me hang out on the bed, opps, she got quiet...  she had found the box where we keep her hangers, no biggie.  Now she just figured out how to dump out her box of blocks.   Our house needs cleaned desperately, but I think it may have to wait until tomorrow, I washed all the dishes, but it really needs deep cleaned, it's such a nasty day though that I don't want to move.  I like to clean with all the windows open and the sun streaming in. 

they were sitting next to each other and looking adorable, of course as I took the picture they both took off.  Lauren actually has very pretty green eyes

At graduation in her princess dress!

running down the hallway in her shorties!

Bedtime with Dada

she loves to eat!

These two play together all the time, Alice even pokes poor Burburs eyes, and she just takes it

The only thing Alice likes to do that is really a problem is grab my computer cords!  and type on the computer, and rip up paper.  I'm sure you can see why it is too hard to study with her around now.  If I could get her to understand there was absolutely no touching the computer, life would be so much easier!

Now she just got mad at burbur (I think burbur was nibbling her toes, which sometimes makes her giggle, and sometimes mad.)  i think Alice felt bad about it though because she tried to give Burbur these nail clippers that she had taken away from her a few minutes ago.

At the end of this she found my thermos bottle that I put some juice in, she is thrilled and rapidly drinking it down.

SUMMERRRRRRRRR!!!!!!!!!!!!

Can you tell I'm just the tiniest bit excited?  I'm finished with my last block exam of the year, and I did so much better on it than all of the other ones.  I think the key was no neuro, the best biochem teacher in the school writing most of the questions, and Physio having endocrine as a part of it.  We also had tons of practice problems that were actually representative of the test.....  isn't it weird how when that happens, that everyone does so much better?  I love my Medical School class, everyone seems to genuinely care about each other, maybe one day I'll learn all of their names.......  That would require more people to come to school each day though.  Apparently next year our schedule is only allowed to have 17 hours of lecture in it at the most, this makes us lose ICM week, but I think it'd be worth it, if we get each afternoon off, like we are supposed to have.

I went out to eat with a great group of friends tonight, it was a delicious hibachi place, so tasty and so much fun.  I get into this funny conversation with a friend, she remembers nursing at 18 mos old.....  I plan on continuing with Alice until she is 2, and then slowly weaning her off.  Which should be easy since that will be 3rd year, and she will probably forget my name during the surgery rotation (I already want to do that one first).   I'm continuitng my goal to educate my fellow medical students about breastfeeding. 

Here are the current misconceptions I have heard:

 When they can eat food they should stop:  I hope this will be remedied during some class, or rotation, but babies start food around 6 mos, we started Alice off on table food, I think steak was her second food, or maybe brocolli was...  not sure.  The AAP recommends babies be fed until at least 1 yr, the WHO recommends at least 2.  I think the world wide average is actually 3 or 4. 


They are too old when they can ask for it.....  Babies ask for it the second they are born, they make this uh, hu, uh, hu sound.  It sounds completely different from a cry, At a LLL I heard every baby under 2 mos make the same sounds to get fed.  Instant happiness.  At one year, Alice makes a sign for milk, and requests num, num.  She loves to eat, and everything is num-num to her, including the rocks outside, which she calls, YUM!  I certainly do not think a 1 year old is too old to be nursing.

The random things we have learned about in school tell us just how important having a healthy gut flora is to the digestion of food, we don't want all those..  firmicuites?  Right?  You can tell just how much I learned during C and K's crazy method of biochem instruction.  Basically those type of bacteria break food down so it is absorbed by the gut more readily, and actually contributes to obesity.  They have tried fecal transplants in rats, and it has been successful at establishing a healthy gut flora.  I wonder how many people would be willing to do this........

The other one is the way people think nursing here takes tons of time.... 
I'm going to bet they have never tried to put a screaming baby to bed at 3 am when they have a quiz at 8 am the next day.  I'm willing to do whatever it takes to get the rest I need to succeed and give Alice a better life.  This does not include letting her scream herself to sleep.  Though if I sleep in a different room, it takes her a while to wake Elliott up and she will put herself back to sleep about 50% of the time.

I'm so glad that it is summer time, and that I get to enjoy  my lovely, sweet and precious daughter.

The Baby Dragon is 1!!!!!

How did this happen?  It seems like just yesterday I was holding her in my arms and smothering her face with kisses, and just so glad to finally meet her.

It's so weird now to look back on pictures of her before she was smiling every second that you looked at her

 

My Baby Girl is one, and is now a toddler.  She is still nursing at night, but not really during the daytime.  I'm not ready to nightwean because I don't want to have to deal with trying to put her back to sleep without nursing her, right now I can nurse her while side lying and fall back asleep.

Now for some birthday pictures..

Praying for Grades

It seems like such a petty little thing, but it's always my big prayer, it used to be for As, for higher grades than basically everyone because I worked extremely hard for them and I was smart.  While I don't think either of these have changed, my goals have become much lower, all I pray for tonight, dear lord, is to pass my classes, i want desperately to become a doctor, I haven't ever wanted to be anything else, I just need to pass everything, I'm really good at the clinical classes we have, just not at playing the test makers games.  Please pray with me for passing these classes!