Showing posts with label harlequin ichthyosis. Show all posts
Showing posts with label harlequin ichthyosis. Show all posts

Saturday, November 15, 2014

Princess Olivia has arrived!

Olivia Marie Turner made her grand appearance November 5th weighing 7lbs 5oz, she was 18inches long. She is just as perfect and healthy as her big bubba!

Birthing story...
As most of you know I had a repeat C-section. When I had Willie I was in labor for two whole days because they induced me and the doctors thought a vaginal delivery would be the best way to go. Little man had different plans. On the third day we had an emergency c-section because my cervix was too small. I ended up having to be put under anesthesia since my epidural was only working on one side of my body. It was the scariest moment in my life, everything was so fast pace and hectic.

Olivia's entrance was much more calm.. We went in at 7:45am, I was prepped and back in the O.R by 10:30am... Since we knew I was going to have a c-section, I had a different type of epidural and it worked wonderfully. A little pressure and a bunch of  "tugging" later, I heard my babygirl cry for the first time! To say it was magical is an understatement... Moments later I was sewed up and on my way to the recovery room with our new little princess. When they wheeled me in, the first thing I saw was Curt in tears holding our daughter in the rocking chair with such pride in his eyes.... Well most of it was pride, the rest was fear LOL.  We know having a little girl is a whole different rodeo. Not completely sure if we're ready for the ride but ready or not, time to saddle up! I was only in the hospital for two days after I had her.

Our new home life...
As soon as Willie saw his sissy he was excited to give her a big slobbery kiss. Mouth opened wide, slobber streaming, me smiling from ear to ear! His mouth covered her entire face lol. I'm pretty sure he thought she was a babydoll at first but then she moved, woah! He was only able to spend a few hours with us... A hospital room isn't the best place for a active toddler!

When we came home he was ecstatic to see mommy and daddy but a little confused as to why we had to bring the babydoll home from that place! I mean he already had plenty of toys, right? haha! He didn't acknowledge her much right away but the first time I changed her diaper and she started crying the "big brother" in him came out quick. He was hitting my leg repeating "noooooo" with a worried look in his eyes as he watched her closely. I tried to explain to him that she had to get a dipey change and she was okay. I kissed her, he kissed her, soon all was well!

She turned a week old November 12th and at this point shes just another member of the family, like she's been here all our life. Willie is a wonderful big brother, checks on her when she's fussing, gives her a paci and sometimes helps me feed her by holding the bottle. He's very gentle with her except when he's all hyped up and playing then decides to give her a little "patting" which is sometimes too rough for my liking but all we have to say is "eaassyyyy" and he calms down and is back to being gentle. As of right now though, I think we've both decided she's pretty boring. LOL ;)
We're currently staying with my mom until I heal up a little more but my incision is looking great and healing up as quickly, if not quicker than it did after I had Willie.


Thank ya'll for all the prayers, positive messages and comments on our facebook page, instagram, email and twitter. They mean more than ya'll know...It's crazy to think that I've been blogging through two pregnancies! We've met some awesome people through our blog and hope to meet MANY more. Of course that means I'll have to step up my blogging game since I've been slacking off here lately. It's absolutely on my "to-do" list and hopefully it'll be easier to do now that we're getting a routine back. I'm pretty excited about what else God has in store for our little family. 


Saturday, October 18, 2014

Excuses, I know.

I can't even remember the last time I updated my blog. I'm a bad, bad blogger...
Since its been so long, let me catch yall up.

Last month I was in the ER due to contractions happening like crazy and I was only 35 weeks at the time.. They gave me shots to stop them, luckily I'm only dilated to a fingertip.. I'm currently 37weeks now though... Yaayyy. We've set my scheduled c-section for November 5th. We're so so excited! We're all ready to see miss Olivia Marie! Everything has been going flawlessly with the exception that my doctor placed me on bedrest so I'd stop having contractions.

Willie is just getting smarter by the minute! He's 16months and absolutely perfect. He's got such a big personality and he's so funny and happy.... He has hit the "fit throwing" stage though, where he throws himself onto the floor and looks at you like "Um, mom... Don't ya see me? It's time to give me what I want.... Right now!" but that's mainly when he gets sleepy and grumpy. We just let him do it, when we act like we don't see him he gets up and acts like it never happened, haha! He's fascinated with my big ol' belly! Everytime my shirt is up over my belly he pokes it and laughs hysterically! It's soooo cute and a tad bit insulting LOL.

Curt and I are doing great, both happy and healthy!

This is mainly a late night post just to let yall know we're still alive lol. I'll update more soon...
If you want more updates feel free to follow me on twitter @StephUncut or follow my facebook page "LifeAsMeDotcom". I try to update them regularly and with pictures. Thank yall for reading!!

God bless.




Saturday, May 24, 2014

IAM; I am more.

It's Ichthyosis Awareness Month, I almost missed it!
IAM: I am a 
woman
daughter
sister
aunt
mommy
wife
Christian
survivor
I am more than my skin. 
If you don't know me, let me start off by saying I'm so glad you're taking the time to read my blog! My name is Stephanie Turner and I was born with harlequin ichthyosis 21 years ago. 21 years ago seems like a million years ago in the technology and medical world. When I was born babies with Harlequin Ichthyosis just didn't survive. My mom was 19 years old when I was born and had no difficulties during her pregnancy at all and given that it was 1993 ultrasounds weren't able to detect my very rare but severe skin disorder. My mom went into the hospital for leaking amniotic fluid only a few short weeks before the due date she was transferred to Memphis, TN which is an hour away from our home town because our local hospital didn't have what it took to deliver a "dry birth". Thank God she was transferred to Memphis!

 When I was born the doctors were very shocked of course and they immediately wheeled my mom into a tiny room and she pretty much just had to hang out there for a while, meanwhile nurses and doctors were constantly coming in and telling her to be thinking about funeral arrangements for me because the chances of me surviving were slim to none.... and closer to "none". They literally had to  blow off  the dust of this huge medical book which had a tiny paragraph talking about H.I. It was very little info because babies usually didn't live longer than a few minutes or hours due to infection, dehydration, skin tightening around the chest which causes suffocation, etc.. Babies affected with Harlequin are born with extremely thick plates of skin with deep red fissures over their entire bodies. This thick skin pulls tightly, causing deformed facial features.  The eyes are pulled so tightly that the lids are flipped inside out and bright red from irritation. Often the nose and ears are barely able to be seen under the plates of skin. And the fingers and toes are contracted and shortened due to the pulling of the thick skin. With time, the original skin will peel off, leaving red and flaky skin underneath. Although, dehydration, temperature changes and infection will always be a concern for people affected with Harlequin Ichthyosis because their epidermis doesn't regulate their own body temperature, hold in moisture or keep out bacteria.

Thanks to God, my strong determined momma and great doctors- I've beat the odds! Not only by living more than a few days but living 21 years! I was raised to not feel sorry for myself, what good does that do? Instead- laugh when you feel like crying, be hard headed, don't give up.. Most importantly, have faith! Have faith in God, he made you... He took his time to create every little part of you. That nose that you think is too big? Forehead that's too wide? Zits that just wont stay away? God loves it! He knows it's beautiful! You're beautiful. You need to know that and never ever forget it. 

Just a few accomplishments in my life? (In order of which they occurred)
-Scored a Cabbage Patch doll from my first crush in Kindergarten! (Playaaa playaaa)
-Had a cutie chase down my wig that blew off while playing outside at recess! (Also kindergarten! My wigs never really been a secret)
-Was a cheerleader for 4 years in middle school! 
-Homecoming maid for 3 or 4 years as well! 
-Had my first super serious relationship at 16
-Broken heart at 17.9! (so close to 18!) lol. 
-Fell in love at 18 1/2
-Married at 19 (when you know, you know!)
-Had my son at 20! Was the 1st person with H.I to ever have a baby!
-Having my daughter at 21. :) 

Most people are so shocked that I've had such a "normal" life. I truly think life is what you make it. Granted I'm beyond blessed and live in a very small southern town where everyone knows everyone so I'm not meeting tons of new people everyday but don't think for a minute I haven't put up with an outrageous amount of stares, whispers, nudges to a friend to "look at her face", ridiculous questions, silly assumptions and insulting comments. You learn to deal with it in your own way. Some people get mad, some people get hurt, some people roll their eyes and keep walking.. Some people like myself try to educate people on what my skin disorder is. If they're still rude then sometimes ya gotta get rude back! To each their own. 

Think that's the end of my story? Not even close! Follow my blog to follow my little family's journey through this crazy world. Husband, mommy, 1 year old son and baby girl on the way! Life's fun! :)

Friday, May 23, 2014

Be careful what you post online!

Tonight Nusrit also known as "Nelly" sent me a facebook message letting me know that she recently found out about  video on YouTube that we were unknowingly in. Apparently a guy named Bill decided to inform people that there are no such thing as "snake babies" they were just H.I babies! How darling of him, right? Well I didn't think so, neither did my friends and family and most "strangers" that keep up with my family. Whats worse is that he included a picture of my baby boy! I mean, I know hes pretty dang perfect and all and sure I didn't look half bad myself to have just been in labor for 3 days and gave birth to a chunkybutt ;) but I'd like for him to ask permission or maybe not compare me to a snake baby but ya know, that's just me!

When I first saw this video I'll admit I was livid! I instantly called my momma (what else is a girl to do?) in tears. I felt so helpless, so insulted, taken advantage of to say the least. I've always wanted to help people.. Even if its just inspire them to be proud of who they are. I know God didn't create me and plan everything about me so I could sit at home and watch Friends everynight. Sure, I enjoy Friends and even George Lopez sometimes if I'm having a wild night and feel like staying up past 10pm! But I know God wants me to do more. I was born to help, educate, inspire, spread my testimony and be a mommy to two perfect kids!

As you probably guessed the video comments weren't going to be featured on "WORLDS KINDEST PEOPLE" anytime soon. (Okay, so I made that up).  Some of my favorite were-
"This is real, her mom was on heavy heavy drugs while pregnant."
"That's no skin disease, that's a curse from the devil!"
"Who the h*ll would f*ck her!?"
...Yep, they're sweet sweet souls! <3

I was so torn when I saw everything. One day Willie and Olivia will grow up and be on the internet. If I'm lucky they'll be writing, on some website playing Mario Bros. but they more than likely will be average kids or teens and be watching videos, listening to music and on whatever social network is cool at the time. I've learned that once something is on the internet, it doesn't come off. What if my kids or my kids friends stumble across the video? "Oh hey dude, saw your baby picture on a video last night! Your moms hot but why people think shes a alien made from the devil?". Poor Willie! (Just added in the "your moms hot" to make myself feel a little better! LOL) No kids want to hear that about their mom! What if he saw the hateful things people say? He'll hear enough without that video!

But I also want him to be proud of himself and his family. I want him to know people CAN be mean, cruel and plain ole hateful. Its his job to be one of the sweet people, people who don't judge, say hurtful things and I want him to be strong, confident, happy. I want him to know he's blessed in many ways and so dang lucky to have a red mommy cause not many other kids have one! LOL!!

After flip-flopping back and forth with my emotions and decisions I think I've decided to keep all the social media I have. Just be more careful about tagging pictures with my websites name and adding people to my personal facebook. I also messaged darling Bill and I have to say I'm very proud of how lady-like I remained throughout the entire message!

Watch Bills video here. Also read a wonderful post from Carly Findlay who also has Ichthyosis! The post helped me a lot tonight! 


Monday, December 9, 2013

Have you thought about your resolution?

Its almost that time! The new year is coming and the old year will be behind us.
2013 has been an amazing year! God blessed us with an amazing son, I gave my life to God, we've been part of an amazing church family since August, I could go on forever but the point is- 2014 is a brand new fresh start!

I've continually said "I'll write later, I'll take pictures later, Oh YouTube? Yeah! I'll do a video later." When does later come? I've realized that while I was putting things off till "later" my life was flying by. I wish like crazy I blogged more, took more videos, more pictures. But the only person who can change that is ME.

I'm not big on making new years resolutions.... I mean who keeps them anyway, right? Well this year is time for a change! My resolutions are--
1.Take more pictures
2.Video more
3.Write more
4.Exercise more
They probably sound like no big deal but they are to me! I love all of them, I just keep putting it off.

I've written 'em down, told yall about them now I'm gonna stick to 'em! :) You just watch!!

Monday, December 31, 2012

Q & A- Living with Harlequin Ichthyosis.

I've been asked to do a video answering questions about living with Harlequin Ichthyosis. I've also been asked to write an article on being pregnant with H.I seeing as how I'm literally the first person whose ever been pregnant that has this skin disorder. I'm honored to be an educator on this topic but in order to answer questions, ya'll have to ask me questions. I've already received more than I expected but I'm always welcoming more. I've said a billion times, I'd rather someone ask vs. assume.

So ask any question you'd like! Personal is fine as long as its respectfully asked and not vulgar. Aslo, Curt will be answering questions as well. Questions for him? Ask away!

To ask us questions click on our:
Formspring anonymously or add your name. 
Stephs twitterCurts twitter,
 YouTube ChannelFacebook or as a comment on this blog! 

Friday, September 28, 2012

Positive Polly at your service!

People, including myself, are quick to name the negatives of their "illness" or "problem" but hardly ever the positives! I believe with every ounce of my heart that with each negative there's atleast one positive... Although it is alot of the times  VERY tough to see! I thought I'd give you a little jump start!

Positives about having H.I (my opinion)-

1.) Brought me closer to God.

2.) I talk to God frequently throughout the day.

3.) When girls have to pay money to go tan so they won't be so pale come summertime, I'm spendin that money on cute bikinis. ;)

4.) Girls have to blow dry their hair, which could take forever!... I put mine on the wig head, put it infront of a fan & go on about my business!

5.) I'm soooo in tune with my body, that could save my life one day!

6.) My state SEC football team are the Arkansas Razorbacks. Their main color is red! Lets just say- I'm a huge razorback fan! ;D woooo pig sooie!

7.) My skin got me out of doing P.E.

8.) It was an easy A for me in English class when I wrote a paper on it.

9.) I've learned to stick up for things & people that I believe in.

10.) I'll talk to anyone regardless of what they look like... Unless they drive a white van with no windows. ;)

Tuesday, September 25, 2012

Bugs already givin us a heartattack!

About 5pm yesterday I started having alot of discharge then last night cramping began, it felt like I was going to start my period but a little more painful.

After attemptin to wake up Curt & failing, I called my best friend & asked if she'd take me to the ER, it may not be anything to worry about but I'd rather be safe than sorry when it comes to bug..

Chels arrived at our apartment about 7 minutes after I called.. She raced in the bedroom, woke Curt up with hardly any effort at all (probably had something to do with the fact she was yelling at him, haha!) we were headed to the hospital in no time. The hospital its 5 minutes away from us, tops! We were signing papers by 10:45pm.

After the nurse took my temp, blood pressure, random questions & asked a million rude questions about my skin, we were put in our room. They are the slowest ER people ever! Pretty good hospital but very slow.. Eventually I peed in a cup & gave blood TWICE. Here's a side note for ya, the second lady that took my blood had to be the rudest nurse I've ever seen in my life.. Let me tell ya! But this one by far outdid herself in the bitch contest.

First of all, I hate doin blood work, I always have! The first lady who attempted it, messed up so the hag-lady came in & gave it a whirl. My arm doesn't stretch out all the way, she obviously didn't understand that even after I TOLD her. She kept pulling my arm out to the point where it was hurting my skin & bone. Nurses never have too much trouble taking my blood from my arm! Then I told her jokingly "I'm a big baby when it comes to takin blood so I'll have to look away." She said "um if you're having a baby you'll need to be tougher than this" said this about 4 times in the 15 mins she was in my room. Okay, 1. I wasn't crying and acting stupid, just simply looked away and clinched my opposite fist! 2. I AM tough! I've been through more in my 19 years than people could imagine. Its not her job to decide whose tough & whose not. I'd like to see her fighting for her life multiple times because of something she has no control over & still maintain a positive attitude!

Anyway, hours later the blood work & urine sample came in & my hormones were good but they thought I might be having a tubal pregnancy. 30 mins later I was in the ultrasound room seeing my angels home, the gestational sac. But the baby was too small to see since I'm only 5wks 1day.

The doctor eventually came in after looking everything over and told me everything was perfect! Everything looked very healthy! :)
We're super blessed no doubt! Now I've gotta wait 24 days to go to the actual baby doctor, I'll be about 8 weeks then! Going on October 19th. Excited, excited, excited!



Sunday, September 23, 2012

Lightening bugs & fireflies

I posted a quick entry stating that I'm pregnant but added very little detail so here it goes-

I'm PREGNANT!! :D According to my last period I should be 5 weeks, 4 days! Excited doesn't even come close to what I'm feeling. I've been on an emotional roller coaster since Friday... Crying because I'm happy, crying because I'm terrified, crying because I've not stopped crying. Haha its been crazy but great!

I've stopped dipping, taking my anxiety medicine & drinking coke all in one day just cold turkey. Between stress, hormones & my cold turkey approach- my body is hating me I bet! But it'll have to get used to it, its all for my little lightening bug!

I already love him/her so much its unreal (I'm almost sure its going to be a girl!). This is so much better than I ever imagined.. To know a whole other life is steadily growing in my tummy, feeding off me, relying on me is just so nerve racking to me.. Don't get me wrong, its fantastic but honestly I can't control my body except how I take care of it.

Here's another thing that makes me nervous, twins run in both of our families! Holy moly! 2? No way Jose, my nerves would be dangling on dental floss! Haha! If we have twins or if we don't it'll be greater than words could describe either way.

I've decided to start a pregnancy journal just encase my little sweetpea wants to read it when he/she grows up! Just documenting how the day went, how I'm feeling, what we're thinking, etc.. I figured it'd be a great keepsake! I'm also taking pics of my tummy every Friday.

In the spirit of babies I figured I'd post pics of me when I was little! :)







Sunday, August 19, 2012

Pre prenatal multivitamin

So I've started taking women's One A Day prenatal pills that our friend gave me, she & my mother-in-law both recommended it seeing as how we're ttc (trying to conceive)..

Sunday I started my period. No big let down since we didn't decide that we were ttc until after I had already felt the period symptoms for this month. We already knew I want going to get pregnant this month.

I downloaded an app to help me try to chart my possible ovulation days. It's pretty hard to do though seeing as how my periods are sometimes irregular to begin with. I was told that the typical ovulation days were two weeks after my period...? We'll try it!

Saturday we told Curts family that we were trying, they were excited but nervous just like everyone else we've told. Completely understandable! I wouldn't expect any other reaction..

Tomorrow (Monday) I plan on contacting my dermatologist and seeing what she thinks about it. Even if she gives us an answer we don't wanna hear I doubt that will change much... I've proven doctors wrong my whole life! I know my body. It's all up to God. I sure hope he rules in our favor though! Haha.
Say a little prayer for us please 😊

Sunday, May 20, 2012

Our move.

If you watch my YouTube videos you know that Curts family lives an hour away from mine... 2 Weeks ago we randomly up and moved to my hometown from his because its closer to his new job that he's starting tomorrow. He's recently got hired on in the Union (apprenticeship, electrician).. Well we lived with my grandparents while we were looking for an apartment, having a dog made it ten times harder! Last night at 11:00pm Curt decided it'd be better if we moved back to his town because..... Well, I think he was just homesick. So being the wonderful wife I am (haha), got out of bed, got Max loaded our junk up with the help up of Curt of course and headed an hour away back to his town... Don't get me wrong, I like both towns but id love if we could Getty our own place real soon so we would feel the need to "house-hop". Everyone had made us feel so welcome and at home but id love to have our own place instead of depending on our families. Thank God we're blessed with such amazing people in our life.

So now we're back to living with his parents. We're steadily looking for a house or apartment that allows pets but its harder than you might think. Keep in mind both towns are very small... We're not willing to give up Max right now, if ever. He's our baby! :) Wish us luck!