Fat Little Legs

Rain Rain Go Away!

noreply@blogger.com (Sarah - Fat Little Legs) — Wed, 26 Apr 2017 17:22:00 +0000

It's been incredibly gray and rainy here for the last couple of days! Which is why I'm still in a floral and bright colors mood!

I offer you my outfits from the last couple of days.
I am seriously in love with this Lularoe Amelia Dress - guys it has freaking pockets!!! Did you catch that? Pockets!!!!!! Ok, ok, I'm a dork, but a dress with pockets is like a magical unicorn to me. And the top is fitted - nice to show off the um... assets - hey flaunt it if ya got it (within reason of course)! While the bottom has these incredibly cute pleats that seem to hide my belly! (And no, I don't sell Lularoe - I'm just a huge fan and appreciate that they make cute clothes for ALL SIZES!)

My necklace is a go to from Stella and Dot that I picked up a couple of years ago!
Then there's this beautiful perfect pink open cardi I just picked up from Torrid a few weeks ago and I have to say it is perfect with pretty much everything in my wardrobe. I'm wearing a Torrid size 2 for reference.

And of course there are those amazing sandals again from DSW and Steve Madden! I love that I can use olive as a neutral!

Maybe florals aren't for you... that's ok! Try any of my outfit ideas and sub in a bright print. Case in point, my outfit from yesterday!

I seriously love the abstract combo of bright orange, purple, and turquoise in this Lularoe Carly dress!!! Yep... it's a dress - I tied it up in the front with a pony tail holder to make it more into a tunic! I added leggings in a complimentary color - one from the top, and because it's rainy and a chilly a long Purple duster, and some metallic flats! If you remember my "rules" from my post on Monday, you'll remember how with wearing florals and bold prints you should "break up the pattern" This outfit perfectly illustrates that concept!

I couldn't end this without showing you a picture of my face from yesterday compared with my face from exactly a year ago! Make sure you are following my Instagram to see more!

My eyes are so dang puffy I could barely see out of them. I was a vision of unhealthiness. I let myself go so far and I thought I would never dig myself out! Now, this April I'm lighter - with a LONG ways to go still but that's ok! I'm also so much happier. I have truly nourished by mind, body, and soul.

Love yourself.
Take care of yourself.
You are worth it.
Trust me ... I've been there and back!
Have an amazing day, and leave me a comment telling me what you'd like to learn more about/see more of from me!

Sarah XOXOXO

Do These Stripes Make me Look Fat?

noreply@blogger.com (Sarah - Fat Little Legs) — Mon, 24 Apr 2017 21:28:00 +0000

Happy Monday! Hopefully you are rested from the weekend. Here in the middle of Minnesota it was actually amazingly gorgeous spring weather and I spent a lot of time outside just soaking up some sun! I am loving a red lip lately with a really natural face - I think it plays off my pale skin (aka white girl ghost emerging from winter).

Makeup: Younique foundation/concealer and 3d+ Fiber Mascara
Lips: Blu-Red Lipsense

And now it's Monday and we are back to our regularly scheduled gray and rainy April! Honestly the cure for me on a gray day is a bright, fresh, and usually floral outfit. Let's talk about florals for a minute. So as a fat girl, I always thought there was NO WAY I could wear florals - I would look like a beached whale in a mumu. Oh boy, oh boy was I DEAD WRONG! Case in point, my outfit from Sunday

Blazer: Gap (a few seasons ago, but recently fits again!), similar style here: Old Navy striped Blazer
Floral Top: Dolman Top from Agnes and Dora
Jeans: Torrid
Shoes: Steve Madden - found at DSW!

The key for me and my apple body shape is balance - basically doing things like make me look less blob like! What I've done here is a super easy combo that any of you can easily recreate by following the rules I'm going to give you. Also these pieces are basics! Think of how many other ways you could remix them!

1. Pick a way to break up the pattern: You could do a solid bottom with a floral top, or a floral bottom with a solid top. Or if you are working with a dress think about a cardigan or denim vest or jacket as a layer to accomplish the same effect. Above I used a solid bottom with a patterned top.

2. Add structure: There are lots of ways to add structure to an outfit, but basically this means again to do something so there is a "nipping in" sort of effect at your waist, top or legs. You could use a belt, a structured cardigan, jacket, or blazer, or use sleek/straight/skinny bottoms with a fuller top or a more fitted top with a fuller bottom. Any of these will add a nice amount of structure to your outfit and accentuate your curves! Above I used a fitted blazer to accomplish this

3. Pattern Mixing: This goes along with the concept of "breaking up the pattern", but seriously do some amazing mixing here! And don't be scared! I'll write another full post about the "rules" of pattern mixing, but for now know that florals pair great with polka dots or stripes! And seriously... do not even get me started with the whole I can't wear stripes - they make me look fat crap! Are the stripes I'm wearing making me look fatter in the pic above? If your answer is "no" then don't tell yourself that! The more we tell ourselves something the more we believe it! So look at yourself right now in the mirror - or on your phone if you don't have one, and say:
"I am beautiful!"
"I am worth it"
"I am enough"

Keep on rocking what the good Lord gave you ladies XOXOXO!
Sarah

Fashion, Body Positive, and Finding Myself

noreply@blogger.com (Sarah - Fat Little Legs) — Fri, 21 Apr 2017 19:43:00 +0000

Yeah - I know, it's mid April, and my last post was at the end of November. Let me catch you up a little, and talk about the direction I hope to take going forward.

In November I came down with a horrible bought of pneumonia that lasted until the end of the year. I thought I would never get better, but slowly I did. We saw 2017 in and I sat myself down and said pretty sternly to myself, "Sarah, you try and try to find happiness and lose weight. You think that losing weight will make you happy, but it won't. What will make you happy is to start living your life again, and stop waiting for the weight to come off."

And you know what? I took myself seriously. No, I didn't stop my weight loss journey. I continued, and I'm happy to say I'm down 36 lbs and 30+ inches now! I'm down 3 sizes!

Progress!!! 36 lbs and 30 inches gone!

But what I did do is start filling my head with images of real people. Women that looked like me, not like models. I stopped reading things with airbrushed images. I started looking at cellulite, and fat legs, and bellies, and seeing the beauty that exists. And along the way I started to freaking love myself! It was incredibly freeing, and honestly the more I loved myself the more I took care of myself. I was healthier mind and body.

In March, I turned 40 and spent 5 glorious day with one of my besties on the beach in Cancun - minus kids or hubby! Oh... and I wore a freaking bikini for the first time in my life! And I ROCKED the SHIT outta it!

Oh yeah, and my sneaky sisters collaborated with my husband to surprise me and come the 1200+ miles to be with me on my birthday!

I guess you say I have been out enjoying life!

Through this journey of self love and #bodypositive or #bopo if you follow Instagram I have been taking a lot of pics! Especially full body pics! And have been exploring and experimenting with outfits - even wearing some things (i.e. shorts and bikinis) that I would have never wore before!

So that brings me to moving forward with this blog. YES! I am still losing weight and want to share about that. But even more so I would love to bring you beauty and fashion tips to help you on your own body positive and self love journey! If you are like me, I truly now believe that this is a must if you are going to positively affect your weight! I can't wait to share more on what is up my sleeve! But for now - TGIF!!!

XOXOXOXO
Sarah - aka Fat Little Legs

Thanksgiving - Lightened!

noreply@blogger.com (Sarah - Fat Little Legs) — Tue, 22 Nov 2016 16:26:00 +0000

I'm sure that you are busy getting ready for the ultimate eating day of the year - Thanksgiving!

For me, the best way to control my eating during the holidays is to make healthier alternatives of my favorite foods. That way I don’t feel a bit of deprivation. This post contains the best of my favorite tried and true Thanksgiving side dishes!

Now on to the recipes…ENJOY!

Cranberry Orange Relish

Picture Credit: Martha Stewart Living

Makes approximately 4 cups of sauce.

½ cup Honey

3 Tbsps of Stevia

2 cups Orange Juice – I use Trop50 Light Orange Juice

2 Tbsp peeled and grated fresh ginger root
2 Tbsp fresh orange zest
1 cinnamon stick
3 cups fresh cranberries – basically 1 bag
1 tsp sea salt
In a medium saucepan over low heat, combine the honey, stevia and orange juice. Simmer until everything is completely dissolved. Add the ginger, orange zest and cinnamon stick. Stir. Next, add the cranberries and simmer stirring occasionally for 45-60 minutes. The mixture should become thick. Remove from heat and stir in the salt.
This can be made several days in advance and kept in the refrigerator.

There is nothing I love more than a tasty cranberry sauce. It is SO easy to make… and tastes 1000 times better than the canned stuff. This is awesome as a condiment for sandwiches, and even a dessert topping!

Sarah's Stuffing

This is an adaptation of a recipe I found about 5 years ago on www.allrecipes.com. I’ve changed some of the ingredients to my tastes, and lightened it a bit, eliminating unneeded butter, and using reduced-fat sausage.

12 oz Jimmy Dean reduced-fat sausage
2 cups chopped onion
2 apples – peeled, cored, and chopped
2 cups chopped celery
1 Tbsp poultry seasoning
1 tsp dried rosemary
1 cup dried cranberries
14 oz Pre package stuffing mix – like Pepperidge Farm
2 cups fat-free chicken broth
1 Tbsp fresh sage leaves
Salt and pepper to taste

In a large skillet over medium heat cook the sausage until brown. Transfer the sausage to a large bowl. Now, use the same skillet over medium heat and add the onions, apples, celery, and poultry seasoning. Cook, stirring frequently for about 10 minutes. Stir in rosemary, cranberries, and sage.

Mix the onion mixture with the sausage mixture and Stuffing Mix in the large bowl. Add the chicken broth and salt and pepper to taste.

I’ll be honest; I usually don’t stuff the turkey… I actually make this the day before, and then put it in my crock pot on low to reheat on Thanksgiving Day. Easy Peasy… and delicious!

Green Beans with Yellow Pepper Butter

Picture from Better Homes and Gardens

This is a classic recipe that makes an excellent substitution to the traditional Green Bean Casserole that is found on many Thanksgiving dinner tables. This recipe was taken from the Better Homes and Gardens Cookbook, and adapted by me to lighten it up. I think it tastes just as great as the original.

1 Tbsp butter
1 medium yellow sweet pepper, coarsely shredded
4 Tbsps margarine or butter, softened
1/4 cup pine nuts
1 Tbsp lemon juice
1/4 tsp salt
1/8 tsp black pepper
4 cups green beans, trimmed
1 large yellow sweet pepper, cut into thin strips

In a small saucepan melt the 1 tablespoon butter. Add the shredded sweet pepper. Cook over medium-high heat for 5 minutes or until crisp-tender. Set aside.

In a blender or food processor bowl combine the 4 Tablespoons softened butter and the pine nuts. Cover; blend or process until almost smooth. Add cooked sweet pepper, lemon juice, salt, and black pepper. Cover; blend or process until almost smooth. Set aside.

In a covered saucepan cook beans in a small amount of boiling water for 12 minutes. Add the sweet pepper strips the last 3 minutes of cooking. Drain the beans and sweet pepper strips.

To serve, transfer beans and sweet pepper strips to a serving bowl. Add the blended margarine mixture; toss to coat.

Baby You're Worth It

noreply@blogger.com (Sarah - Fat Little Legs) — Wed, 02 Nov 2016 15:43:00 +0000

You know the song - it's playing in your head right now isn't it? #sorrynotsorry
But seriously... worth... self-worth. It's a bigger issue/topic than you probably think.

Right now I want you to go to the mirror and look at yourself. Can you look at yourself and honestly say "I LOVE YOU!"?

Even though over the last 5+ years I've gotten fatter and fatter (yes shock the "F" word!), I've learned to love myself and treat myself with the respect that I deserve. Do I always look in the mirror and say "I LOVE YOU!" ? Nope! But I try to, and I've learned along the way that I'm worthy of taking care of myself even if I'm overweight.

I've taught myself how to actually apply makeup the right way (Thanks YouTube)!
I purchased myself some lovely jewelry.
I finally decided to do something about my hairy face (Thanks PCOS) and get it waxed
I learned how to do my brows.
I learned how to dress myself at the weight that I'm at - and look damn good doing it!
I learned to walk with confidence regardless of my size.
I learned to speak up for myself, and be comfortable striking up a conversation with someone new.

Were these things always easy? Nope. I mean forcing myself into social situations and striking up new conversations with someone was basically torture. But you know what? I'm worth it. I'm fun, I have value to add to someone's life, and I deserve to be heard just like the skinny girl.
I deserve to have kick ass makeup and clothes.
I deserve to have a flattering haircut and be pampered
I deserve a killer pair of boots or heels.
I deserve a full body massage without shame.
I deserve to wear something a little or a lot sexy.
I deserve to walk into a store and not have to shrink to the back to the hidden plus size section!

I'm worth it.
You are worth it!
You deserve it too! Never forget that.

Because you can't work on the outside until you've worked on the inside.

Now... your mission should you choose to accept it is to write yourself a love letter. Yep, I said write yourself a love letter. Then put it away someplace and open it up in around 6-12 months and read it to yourself.

Comment below that you've written yourself a love letter and next week on Wednesday I'll choose 1 person to win a fun beauty product from my stash of things I love!

Now head on over to my Facebook page tonight to get some fashion tips from yours truly!

Friday Cuteness

noreply@blogger.com (Sarah - Fat Little Legs) — Fri, 28 Oct 2016 15:55:00 +0000

Nothing more than a little something cute for a Friday. My girlie got new glasses this week! I'm biased but isn't she adorable?!?

She is my WORLD!
Everything I do, I do for her - even losing weight.
It took me 5 years to realize that she needs a healthy mama! I want to be around to love her, care for her, and see her grow up. There was a reason she made it, and I know and believe in my heart that God has some HUGE plans for her! I certainly don't want to miss that.

Lean By 2017! I'm doing it! I'm giving it my all!
I'm doing it for me... of course, but I'm doing it for her!
Watch me... or join me! Let's do this!

Gone Missing

noreply@blogger.com (Sarah - Fat Little Legs) — Mon, 24 Oct 2016 18:23:00 +0000

Missing since August 8th...

19 pounds
18 inches
size 24 pants/jeans
size 3xl shirts

But that's not all... Also missing...
an addiction to sugar
a seatbelt extender
constant exhaustion
plantar fasciitis
depression
anxiety
headaches
body aches
an addiction to caffeine
crabbiness
irregular cycles
fast Food
self-Loathing
too much alcohol

And don't forget our friends...
Shame..
Guilt...

Have you found any of these things that have gone missing from my life?
If so, please don't bother returning them!

Throwback Thursday - Forget Past Mistakes

noreply@blogger.com (Sarah - Fat Little Legs) — Thu, 20 Oct 2016 14:49:00 +0000

I forgot what it used to be like to sit and stare at a blank page and want to write so many things, but it's impossible to get them out of your head and onto the page! It's overwhelming and yet it feels OH SO GOOD to have this outlet again! Thank you for those that are reading along again and have already reached out to me. It has been so fun to reconnect with you!

So where do I possibly even start with where my life has been the last 5 years... there's way too much for you to catch up on. So I've decided a blog theme day is in order - Throwback Thursday - to recap certain parts of the last 5 years of my life. I hesitate where to start but maybe I'll start with surgeries.

Not mine, Lily's.

Over a span of less than 3 years my daughter had 7 surgeries... yep 7 - you read that right. Let's see if I can remember:

Ears
Ears/Adenoids
Hygroma Removal - Back of Head
Ears
Ears/Sinuses
Hygroma Removal - Part 2
Ears/Tonsils

Just writing that all seems a little unbelievable. Sure, I know that there are kids that have WAY more surgeries and most of hers were certainly "routine", but when your baby is going under anesthesia and a knife it takes an emotional toll on you.

First, you pretend it doesn't bother you. You say things like - oh it's no big deal! You act brave, you act like it's just "normal".

Then you tell yourself that this will probably be the last one, so just hang in there. Make it through this and you are golden!

Finally you realize it isn't the last one and the time comes where your preschooler has to stay overnight in the hospital and is in excruciating pain, you sit there helpless and bust out in tears because there is nothing you can do, and this - this awful dark place has become more the norm than the exception! So you eat 5 brownies with thick, fudge frosting, and half a pizza and wash it down with 7up mixed secretly with Vodka and it dulls your pain - momentarily. And you gain 8-10 or so pounds.

8-10 - 7 times .... that 60+ pounds of weight you've gained in addition to the 60 or so pounds of "baby weight" you never lost in the first place. And the world grows a little darker...your clothes grow a little tighter... your skin is awful because you don't take care of yourself. You buy one of the biggest sizes of jeans you've ever worn in your life. You're disgusted with yourself. Some days you hate yourself. Your eyes are puffy because you cry more than you don't...

And one day you look in the mirror - like really look in the mirror and take stock of everything and you see this...

Summer 2016

Where this person once stood...

Goal weight - Summer 2010

Every.single.day I am reminded of my failures when I look at myself in the mirror. Because gaining weight back after a HUGE loss has to be one of the worst things I've ever experienced emotionally. It's shameful! I'm still wrapping my head around it. It's screws with your mind.

This morning - I came across this quote in my timehop on Facebook from before Lily was born

Forget... forget and forgive myself. The past is the past. I have no ability to change it or control it. But I CAN move forward. We can all move forward. I'm going to do this!!! And so can you!

No Fear Friday - What are you afraid of?

noreply@blogger.com (Sarah - Fat Little Legs) — Fri, 14 Oct 2016 20:07:00 +0000

Fear. Does fear ever hold you back?
I know it holds me back. It's held me back for the last 5 years. It's kept me from living my life and succeeding. I mean... what if?

What if:
... something happens to my kids
... I get in a car accident
... I eat too much
....I exercise too little
... I don't lose very much weight
... I don't lose any weight
... I gain it back
... he doesn't like my body
... people stare
... I finish last
... I FAIL

How many times have these "what ifs" held you back?

I hear it over and over and over again. I'm scared I'll fail, I won't succeed. I don't want to start a weight loss plan, because I'm scared that I won't be able to commit. I'm scared to start because Halloween, Thanksgiving, Christmas, my birthday, my dogs birthday... you fill in the blank is coming up. I'll just wait...

And then you wait... and wait... and a day turns into a week, turns into a month, turns into a year, and suddenly your "baby" is turning 5!

And fear held you back and you are back at square one with your weight loss and you are discouraged and sad about how much time it took for you to get to that point and you are overweight... obese, by over 100 lbs again.

FEAR... it is the enemy my friends! Take it from a person that has been to hell and back again. Don't be me! Don't let fear control you. Don't let it stop you from starting, getting healthy, and being AWESOME!

There are still 11 weeks left of this year! in 11 weeks you could be healthier, stronger, happier, shrinking! Don't be Afraid to be AMAZING!

Right now I'm in a 12 week challenge group, and we plan on nothing stopping us for the rest of the year! If you want information on joining send me a message on Facebook! I would love to share accountability with you!

When Life Gives You Lemons

noreply@blogger.com (Sarah - Fat Little Legs) — Thu, 13 Oct 2016 16:12:00 +0000

Is anyone out there?

Is this thing on?

It's me. Real, honest me. Here I sit now almost 6 years since I hit my lifetime goal with Weight Watchers after losing 116 lbs! Not even months after that moment I got pregnant with the baby that most of you know now as the ever joyous and fabulous Lily. Along with that pregnancy and my miracle girl, came a pregnancy in which I gained 80 lbs and NEVER lost them. Add another oh say 50 lbs to that over the last nearly 5 years and I'm fat... really really really really fat.. AGAIN. Please don't tell me not to say that. It's the truth, and please also know that unlike before Lily I no longer let it define my worth as a person. I don't care. I love my life. I love my face, my hair, my outfits. I walk with confidence. I'm a smart bad ass lady! I rock!

But... just one but... I hurt. My feet hurt. I can't play with my kids like I want to. I'm scared of dying of diabetes or heart disease. So... this is my journey to get healthy ... AGAIN! I hope you are still here to follow along because you should know that there isn't a moment that I don't think about this blog and how I can get back here to what my passion once was. But my life... in the last nearly 6 years has changed. I've been thrown A LOT of LEMONS!!! See, before I was on this journey to get healthy so I could have the perfect pregnancy, and I did get healthy, but I didn't have the perfect pregnancy AT ALL. My pregnancy was a LEMON! And what did I do, I threw it back and asked for chocolate... lots and lots of chocolate! And wine! And cake! And chips! And... well, you get the picture. And now here I am ready to declare to world once again that I'm FAT and something needs to be done about it.

I will do this. The alternative is that I die. Please join me. I offer you encouragement and ideas and food, and fuel to make you love yourself. You offer me accountability in return.

I plan to be open and honest. I plan to rock this, and I plan to only look at how far I've come and not how far I have to go. Let's rock this thing! Who's with me?

Our Beautiful Butterflies - Take 4

noreply@blogger.com (Sarah - Fat Little Legs) — Mon, 16 Feb 2015 13:00:00 +0000

In Lily's first year of life, I had an idea. An idea to show the world what Turner Syndrome looks like. To date, it, and and the last 2 years of posts (2013 and 2014) remain my most popular posts ever. A fact that I'm both amazed and proud of. Every year I have new additions to the post that includes girls whose mothers found those posts, and it gave them hope and encouragement. Turner Syndrome is not some horrible drawing from a medical text book, it is these amazing, beautiful, smart, and capable girls! And that, is mission accomplished!

February is Turner Syndrome awareness month, and Lily and I wanted to do something to help spread awareness. Awareness of what Turner Syndrome is. Awareness to the just diagnosed, that this does not have to be a bad thing, and that hope to the expecting mother, carrying a precious baby with Turner Syndrome, that this will be a journey that is worth any hardship you may face.

If you have found your way here and are expecting a baby with Turner Syndrome or you have a child that was recently diagnosed, please know that you are NOT alone. There is an entire community waiting to welcome you. Please, feel free to email me at srhrss@yahoo.com so that I can help you find your way! There are other mother's (including me) that have been there, and we want to help!

The butterfly is the Turner Syndrome symbol. The TSSUS chose the butterfly because the butterfly is feminine yet strong, every butterfly is unique, and butterflies fly on their own which is our hope for these girls. I think it fits so well because butterflies may at first glance appear fragile, but are truly strong and beautiful, just like these girls! Over the past 3 years I have come to know many of these girls's mothers, and some I have formed life-long friendships with. And again, putting this post together this year, I have been moved to tears many times. 2 years ago, I learned that Lily and I are not alone, this year I know we have an entire support system to lift us up whenever and wherever we need it. These people are our family!

My hope is that you'll share this post as much as possible. Please post it to your facebook, tweet a link to it, email it to your family, friends, your local media. Alone I'm just a single blogger, with a beautiful daughter who happens to have 45 chromosomes. Alone, there isn't a lot I can do, but together we can make a difference!

So without further explanation here are our beautiful butterflies - 45 chromosome princesses of all ages, they are many and varied, they are miracles, our one percents!

Of course first we'll start with the little girl that made this all possible... Ms. Lily Grace herself. Can you believe how old she is getting?

Lily Grace - 3-1/2

Always the star of the show, Lily is our fun loving social butterfly! She loves preschool and staying home 2 days a week with her daddy! She loves anything sparkly and pink, and loves dresses and skirts that twirl, Disney princesses - especially Ariel from the Little Mermaid. She is a giant fan of watching DCTC on You Tube, and giving her big brother a bad time! Lily struggles with lots of ear, nose, throat issues, and growth, but only than that is doing amazing and is for the most part healthy!

Abbey - 3

This sweet little girl was given a 2% chance of survival at 13 weeks in utero when they discovered a cystic hygroma. With later testing we learned that she has Turner Syndrome. Abbey entered the world at 37 weeks at 6lbs 5oz and 18.5" long. Abbey is a blessing to our family! She is now 33" tall and weighs a mere 25lbs, but she lives life fearlessly and to the max chasing after her big brother and sister. She touches the lives she enters with her big beautiful smile and friendly demeanor. We know that God has big plans for her.

Ivy - 4-1/2

Ivy was diagnosed at 16 weeks gestation. She was born with a heart defect and had it corrected at just 4 days old. She has been on growth hormones for 2.5 years and though still small, is growing. She'll be the first to tell you she's going to adopt her babies, she loves life and loves being the center of it even more. She's a goofy, loving, friendly 'Shorty Cakes' who brightens the world with her joy of life

Mason - 1 YEAR OLD (Her birthday is today)!

Mason was born February 16, 2014 at 34 weeks with mosaic Turner Syndrome. She was 3 pounds 7 oz 16 in. She is a determined and curious little monster and is always on the move.

Taylor - 14-1/2

Taylor was diagnosed with Turner Syndrome at birth.

Lily B - 3

A cystic hygroma was discovered when Lily's mom was 12 weeks pregnant, and she was diagnosed with Turner syndrome at 16 weeks gestation via amniocentesis. We were given the option to terminate, or carry on with the pregnancy, but we were told she most likely wouldn’t make it past 20 weeks. We were heartbroken, but decided to give her a chance at life, and prayed for healing. At the 20 week ultrasound, it was discovered that the cystic hygroma had shrunk in half, and she now had a good chance at surviving to birth! My pregnancy with Lily was very stressful and emotional. At 31 weeks, it was confirmed that Lily had a coarctation of the aorta, which was repaired 2 days after she was born. Lily was born in Boston, 3 and a half weeks early, weighing 4 lbs 11 oz and transferred to the Children’s Hospital for her surgery. She spent two weeks recovering in the hospital, and came home on a feeding tube which she was on for 9 weeks. In her first year of life, Lily had frequent ear infections, and had tubes placed to control this. She had her tonsils and adenoids removed when she was 2 because she had obstructive sleep apnea. Lily has been on growth hormones since she was 18 months old, and is steadily following her own curve. Lily wears glasses (when she wants to) for severe astigmatism. We have learned that Lily does everything on her own timeline. Lily sees a speech therapist twice a week for a speech delay, and absolutely loves working with her “teacher.” Just in the past couple days, she has decided she is ready to potty train, and is working very hard to accomplish this goal.

Lily is so sweet and compassionate, and her soul shines bright. She adores her older brother, Schuyler, and her little sister Sage is her sidekick in creating chaos. People assume they are twins, because they are 11 months apart, and Sage is still letting Lily hold a 1 inch, 1 pound advantage. Lily loves Dora, Diego, building with blocks, daily yoga or gymnastics, and reading stories. Lily asks to go to church every day, and loves family prayer time. We are all so thankful for the miracle that Lily is, and can’t imagine life without the joy she brings to our family.

Emma B - 2/12

Emma was diagnosed with Turner Syndrome the day after she was born. She is a tiny package of dynamite and is full of life. She loves to play with her older sister and sing and dance. Despite some of the challenges presented to her medically up to this point she is a thriving, beautiful, happy, TEXAS country girl!

Mikaylee - 3

Mikaylee is a feisty 3 year old who was diagnosed at 6 weeks old. She was diagnosed after a 28 day stay in the hospital with eating and breathing issues due to her small size. She has no physical characteristics of Turner Syndrome, except for her small stature and chronic ear infections. She is fighter in all senses of the word! She loves the color pink, all things Frozen, Rapunzel, shoes, purses, babies, dance and to sing! She is ALL girl and loves to chase her too older brothers and love on her younger sister. She is fiesty, strong willed, funny, and curious.

Sierra - 14

Sierra is 14 years old now, she has mosaic turner syndrome. She was born on her due date and spent 3 weeks in the NICU due to breathing and feeding problems. She was diagnosed until just before her fourth birthday (her small stature was blamed on other medical conditions) and started growth hormones soon after. Sierra is our miracle girl, and strong willed which has helped her overcome many medical problems. Sierra is very social and loves to make new friends.

Sajda - 4

Sajda is now almost 4 years old. Before she was born she was diagnosed with a congenital heart defect, Pulmonary Atresia with Ventricular Septal Defect. At 5 days old she had open heart surgery for this. They also ran some tests to determine if she had any other health issues and this is when we found out she had TS. So far she has not had many issues besides a speech delay that group therapy helped and thyroid problems that she takes a daily pill for. Sajda is the youngest child of 5 and has 4 older brothers. She loves running and talking up a storm. And lately she has been petitioning to join a soccer team :)

Juliana - 3-1/2

Juliana was born a month early on June 2, 2011 after a very touch and go pregnancy where we were told she would not survive as she had several heart defects, a large cystic hygroma and fetal hydrops. She had open heart surgery at U of M Motts Children's Hospital in Ann Arbor, MI on June 6, 2011. She had a rough recovery but was able to come home at 5 weeks old. She has been home ever since. She is now 3 1/2 years old and very active and energetic. She has a hilarious personality and her favorite people are her older brother and younger sister. Her favorite TV character is Curious George and of course she is an Elsa fanatic from Frozen. She attends 3 yr old preschool and loves it.

I thank God for Juliana everyday, her being alive is nothing short of a miracle.

Zoe Grace - 4

Zoe was diagnosed with classic Turner Syndrome (45,X) shortly after birth. During the pregnancy, the hospital detected a defect in her umbilical cord that affected her growth. That led to a chromosome screen after she was born, despite Zoe showing virtually no signs of TS, except a high, arched palate.

So far, she has grown well and been very healthy except for problems with her ears, corrected with tubes at age 3. She does struggle with developmental delays and is still learning to speak clearly. She loves music, animals, counting and ABC's. She also has an incredibly good memory.

Zoe is a huge blessing and charms everyone she meets with her sweet spirit and joyful smile.

Emma T - 3-1/2

Emma was born June 25, 2011, and is now a 3.5 year old active sweet girl. Emma has classic Turner Syndrome that was diagnosed in utero. We always say it is just a diagnosis and does not define her or prevent her from anything she wants to do! She loves participating in ballet, tap and has just started karate! She currently attends a special ed pre-k for speech and other minor delays. She loves playing with her friends at school and is looking forward to attending both a regular 1/2 day pre-k along with her special ed one during the next school term. Emma adores her sister, Erika. She is a miracle that everyone loves at first sight

Kessleigh - 4

Kessleigh was born in October of 2010, she was diagnosed at birth with classic TS. She is now a stunning 4 year old. Kessleigh, like most other TS girls, is incredibly small for her age. She has been hospitalized a total of 13 times and has had one surgery. She was born with one Kidney, and that kidney is abnormal. She takes a nightly growth hormone injection as well as a preventative antibiotioc. She is loud, caring and very smart. She is our miracle girl.

Emma A - 3

Emma now 3 years old was dx with Classic TS at birth. I have to say she’s a handful but love her to pieces. Her personality has changed completely she’s more demanding but sweet at the same time. She has been on GH for 2yrs now. She has had a couple of ear infections and 2 sets of tubes. This past summer she had her adenoids remove to help with the ear infections and its working. We currently see Endo and ENT at Lurie Children’s Chicago TS Clinic which is going great. She is always hungry and has so much energy but I blame it on the GH. Loves her dolls especially queen Elsa and Princess Anna. We are still working on getting her potty train. Last year around this time she could only say her name and a few words now she can’t stop talking and singing.

Brenna - 10

My name is Brenna and I'm 10 years old and I am in 5th grade. I was diagnosed with Turner Syndrome when I was a baby. When I was 5 1/2 weeks old I had heart surgery to repair a coarctation of my aorta. I have also had my tonsils and adenoids out. I started taking GH when I was 8 and so far I have grown 8 inches in 2 1/2 years. I like to play with my dogs, and play outside. I am also in tennis and take lessons once a week.

Eliana Grace - 4

Eliana Grace is a healthy, happy 4 year old butterfly who enjoys dancing, singing, and any type of social interaction. She is loved and adored by all who know her, and is quick to make friends. While she may be tiny in size, she is large in personality. She is our blessing and our reminder of God's grace and mercy. The Lord has mighty plans for her!

Ryann - 8

Ryann (pronounced Ryan) is tiny, but she is mighty!! She is a Daisy Scout and participates in The Special Olympics. She is unselfish and caring, but stubborn and bullheaded. She has taught us perseverance. She has been to way too many Dr. Appts, but at the end, she always gives the Doctors and Nurses a hug. She is the life of every party! Her favorite things are Birthdays and going to school. We are so very proud of her and the her accomplishments!!

Sienna - 8

Sienna was diagnosed as having mosaic turner syndrome at 4 1/2 years old. She had never been on the normal growth chart - always 0% or less! At 5 we had all the introductory tests and found out she has a horseshoe kidney. We found out she needed glasses in kindergarten and she has had tubes in her ears since age 1. She has had her tonsils and adenoids out - and started GH shots in December 2011 at age 5. Three years later - she is a very active 3rd grader! She learned to give herself the shot 1 year ago and has grown 11.1 inches in those three years! She is now 3% on the normal growth chart- YAH!! You can see in the pic (next to the donkey in the blue coat!) she is still the shortest one in the bunch - but with her immediate peers it is much less of a difference! She has never really cared about it anyway (so far!) - she is just spunky little Sienna to everyone! We have horses and she rides her two ponies - as well as takes lessons weekly at a nearby horse farm. She is a great swimmer, a fast runner and this year started an acting class - she is a total ham! We feel having TS is a blessing in disguise at this house - it has helped us teach our daughter to be brave, strong and push through things that life hands you - and we have met some wonderful people - physically and virtually! (Sienna is on the left in the 3 pony picture!)

Brissa - 22 months

Brissa was diagnosed with Turner Syndrome at 16 weeks gestation and also with a congenital heart defect called hypoplastic left heart syndrome/ intact atrial septum. Brissa is doing great,she loves to eat,dance,sing and learning how to walk.My beautiful miracle is the best gift I love her so much

Madi - 13

Madi is from California and while she has the struggles that all TS girls endure, she tries to make the most of it. She Is a great student who spends her free time drawing Anime’ and being a flyer on a cheer squad. Madison also plays three instruments. She plays the saxophone in the band, the violin in the orchestra and is learning guitar, too! Madi wants to spread awareness so that other girls can have an earlier diagnosis, and not have to struggle for answers.

Emory - 20

My name is Emory, and I'm 20. I was diagnosed with classic TS at birth. I took growth hormone from age 2 until I was 12, and started HRT around that time as well. I struggled with various health problems as a child, but now we keep an eye on my heart and that's about it. Currently, I am in college as a history major with a minor in psychology.

Tenley Kate - 10 months

Tenley Loves books, music, and her puppy- Alice! She has Classic Turners (45x) with no current health problems! Happily lives with her mommy and USN Corpsman Daddy in North Carolina.

Luna - 8

Luna was first diagnosed at 4 days old with complete Agenisis of the Corpus Collosum. Ultra sounds when her mom was 28 weeks showed something wrong with her brain. They thought she had enlarged ventricles of the brain. When she was just 4 days old, right before we were to leave the hospital, they finally decided to take an MRI. The results showed that my baby had CACC. an extremely rare brain disorder. However with this disorder always comes a secondary or accompanying disease or syndrome. ..the race was on to find out what hers was...When she was around 2 months old, and after tons and tons of blood work, they discovered that Luna had Turners Syndrome Mosaic. Which, while being yet another rare disorder, was one of the top 3 rarest disorders to accompany ACC. Today she is a bright happy little girl, with an infectious laugh and genuine love of life. She has a few developmental delays and sensory issues. She also suffers from seizures. On March 3, 2015 she will be 8 years old. She loves to draw and dance, and listen to music and play dress up. Her favorite movies are Frozen (of course) and Thumbalina. She is an amazing little girl. I love her with all of my heart, and can't and don't want to imagine a world without her in it. There is never a dull moment with her around and every day is an adventure. I am truly blessed to have her in my life.

The WHOLE Truth

noreply@blogger.com (Sarah - Fat Little Legs) — Thu, 20 Mar 2014 15:31:00 +0000

Dear friends, or maybe no one, as I'm not sure who is still reading this blog. Honestly, I don't care (OK I probably do), as if I'm the only one that ever reads this, it is cathartic, and something I need to admit and release.

2-1/2 years ago I gave birth to my beautiful, unique Lily, and since then it's been a complete roller coaster ride of learning to cope with a child who has many extra medical needs.

I rode that coaster for the last year by doing nothing but eating my feelings of sadness, depression, and stress! Right now, I've on both an anti-depressant and an anti-anxiety med to help me get through each day. This is the truth people, this is my life. I have been ashamed for over almost the last 2 years to admit to it. I feel brave today. I feel like emerging from the shadows. I'm done hiding behind my daughter's Turner Syndrome diagnosis and using it as an excuse to eat myself back to where I once started from.

As of Monday, I was only within 30 pounds of being back to my original weight when I first started this journey in 2008. I am beyond ashamed! I hate myself. I know I shouldn't hate myself, but right now I do. I'm a statistic now... I'm the one that is well on her way to gaining it all back. I don't want that, but yet I don't stop myself.

I get bad news... more ear infections, more surgeries, now strabismus, and patching needed for Lily's eyes. I hear: eat pie, eat cake, drink a Venti white mocha with whipped cream, drink wine. It will make you feel better, and honestly, it does. I'm not going to lie, this is how I coped the last 2 years. Eating... and it makes me feel better. But long term - I'm worse. I have knee pain, I can't walk up the stairs anymore without being winded, I can't get up and down from the floor easily to play with my kids. It makes me sad, overwhelmed, and ashamed, so I eat more.

You can see the cycle here.

In 2 days, I turn 37. I've spent my 30s going from nearly 300 lbs to 165 pounds, to the mid 200s again. I'm a wreck.

At the beginning of this year, I went through Rick Warren's "Daniel Plan" study with a small group. Even though, I continued my eating habits mentioned above during this study, I benefited from learning from these amazing people, making new friends, and realizing that I alone am powerless! Only through God's strength am I going to do this. I'm powerless in the face of this alone, but through HIS strength I am powerful! He loves me, no matter what my weight, but my body is a temple, and I'm treating it so unlike a temple right now.

That study has ended now, but through it I was encouraged to read, It Starts With Food. If you've ever heard of Whole30, or Paleo, that is what this book is about. But mostly it about healing yourself through choosing good, whole, foods. It turned my life upside down in ways that I didn't want to admit. I had so many of the symptoms the book mentioned. After much deliberation, I decided to start a Whole30 this past Monday, March 17th. I'm on day 4 now. This morning, the conversations in my head were startling. I woke up with chills, aches, and nausea, and I wasn't "sick". This is hard. I feel horrible. I want to quit.

So I came here. Because I know in my heart I don't want to quit, I know it my heart I can't do this to my body anymore. I am strong, I am brave, this is not hard compared to where I've been in my life.

I deserve so much more than the life I've been giving myself.
I deserve freedom from this sugar and food monster.
I deserve peace instead of stress
I deserve comfort that doesn't come from eating food.
I deserve to let go of the shame.

If you read this and have anything encouraging to say, today is the day I need to hear it. I will overcome, this is not going to defeat me!

If you want to follow along on my Whole30 journey or just see cute pics of my kids follow me on Instagram

Our Beautiful Butterflies - Take Three!

noreply@blogger.com (Sarah - Fat Little Legs) — Mon, 03 Feb 2014 12:07:00 +0000

In Lily's first year of life, I had an idea. An idea to show the world what Turner Syndrome looks like. To date, it, and it's sister post from last year remain my most popular posts ever. A fact that I'm both amazed and proud of. In fact, this year's addition includes a couple of girls whose mothers found that post, and it gave them hope and encouragement. Turner Syndrome is not some horrible drawing from a medical text book, it is these amazing, beautiful, capable girls! And that, is mission accomplished!

February is Turner Syndrome awareness month, and Lily and I wanted to do something to help spread awareness. Awareness of what Turner Syndrome is. Awareness to the just diagnosed, that this does not have to be a bad thing, and hope to the expecting mother, carrying a precious baby with Turner Syndrome, that this will be a journey that is worth any hardship you may face.

The butterfly is the Turner Syndrome symbol. The TSSUS chose the butterfly because the butterfly is feminine yet strong, every butterfly is unique, and butterflies fly on their own which is our hope for these girls. I think it fits so well because butterflies may at first glance appear fragile, but are truly strong and beautiful, just like these girls! Over the past 2 years I have come to know many of these girls's mothers, and some I have formed life-long friendships with. And again, putting this post together this year, I have been moved to tears many times. 2 years ago, I learned that Lily and I are not alone, this year I know we have an entire support system to lift us up whenever and wherever we need it. These people are our family!

My hope is that you'll share this post as much as possible. Please post it to your facebook, tweet a link to it, email it to your family, friends, your local media. Alone I'm just a single blogger, with a beautiful daughter who happens to have Turner Syndrome. Alone, there isn't a lot I can do, but together we can make a difference!

So without further explanation here are our beautiful butterflies - 45 chromosome princesses of all ages, they are many and varied, they are miracles, our one percents!

Emma T - 2-1/2

Emma was diagnosed in utero as she had a large cystic hygroma and hydrops. We were told that she would not survive and gave us a 0% survival rate. This was extremely devastating in itself; however, we had already lost a baby at 28 weeks in utero due to severe hydrops/hygroma that was due to a severe heart defect and a miscarriage at 9 weeks. However, God had bigger plans. At 28 weeks in the pregnancy the hydrops and hygroma finally resolved and the doctor gave Emma a 1% survival rate. I do not believe it a coincidence that at the same week in the pregnancy we lost our Emily but we were given a change with Emma! We are always thankful and grateful for our miracle girl.
She is now a 2.5 year old active sweet girl. She adores her family and especially her sister Erika (6 years old). She is amazing and always loves everyone and everything. She is always so happy and there is no one that does not love Emma after having met her.

Madi - 4-1/2

At 20 weeks gestation Madi was diagnosed with Turner Syndrome. It was suggested to abort because she was only given a 1% chance of survival. Well here were are almost 4.5 years later with a beautiful, spunky little lady! Madi is just like every little girl..she loves her babies and playing dress up! And she LOVES Doc McStuffins and playing doctor. We thank God everyday that HE chose us to be her parents! She brightens every room and brings joy to everyone she meets.

Sajda - 3 (almost!)

Sajda is a Kurdish Irish American girl with Mosaic Turner Syndrome. She is almost 3 years old now. When she was born she was very sick because she had a congenital heart defect called Pulmonary Atresia with VSD. She had open heart surgery at 5 days old to place a conduit and repair her heart. Since then she has been thriving and has only had slight issues with her thyroid. In the last year she has drastically improved in her speech and now talks nonstop it seems :) This past summer she took her first international trip to Kurdistan and Ireland. Her mother says, "She brings smiles to me, her daddy, and 4 older brothers all the time. Life wouldn't be the same without her. She truly is my sunshine, my pumpkin!"

Ivy - 3-1/2

Ivy was born on 6/18/10, so she's now 3.5. She's a total spit fire, girly girl with no fear and an intense desire to experience life. She had a heart surgery at 4 days old and has been taking growth hormones for a year and a half. In that year and a half we've seen nearly 6 inches of growth! Yeah!! She's still the smallest kid in her class by a landslide, but that doesn't slow her down, if anything it's made her tougher. She enjoys animals, babies, princesses and mud. She really lives up to her "Italian redhead" status and never leaves the day dull.

Maizy - 19 months

Maizy is 19 months old, and is a 45XO. She was diagnosed at 25 weeks gestation, and at 35 weeks we discovered she had a coarcation of the aortic arch. Her family packed up and "moved" 4 hours away to be near Children's Mercy Hospital in Kansas City, where she was born. At 9 days old she had open heart surgery to repair the coarc, and 40 days later finally came home. She had to return at 3 months to have an angioplasty to widen the patch, and since then, she has had no recurrent coarctation. Maizy is a lively, active toddler, who loves to follow her 3 1/2 year old sister, Piper, around, jabbering constantly as she goes. She loves playing outside, listening to stories, singing, and snuggling up with mommy. Maizy is as spunky as they come, and doesn't let anything slow her down. Her mother says, "We can't wait to see what she has in store for the future!"

Mikaylee - 2

Mikaylee was diagnosed at 6 weeks old after spending a month in the hospital for breathing/eating issues. Mikaylee has mosaic Turners Syndrome. She shows no physical characteristics except her extremely small frame, and frequent ear problems, especially infections. Despite her small frame she is a fighter that loves to dance, talk, play with her babies, and run after two older brothers. She is precious, sweet, feisty, and down right hilarious. Her mother says, "We can not imagine our life's without her."

Kambree

Kambree was diagnosed with classic TS just after her 2nd birthday, thanks to a wonderful pediatrician who recognized some of the signs in her. She has an older brother and an older sister who she loves keeping up with. She loves smothering her family with hugs and kisses. She is really doing well at learning Sign Language, too. Her spunky personality and strong-willed spirit are definitely bigger than her. What she lacks in size, she makes up for in personality. Her mother says, "Because of her, we know that miracles really do exist!"

Isabella - 3

Isabella's mom writes, "At 47 years old, all my children were grown at 15, 18 and 21. I was returning to work after 20 years at home with them. But God had other plans for me. The day before I was to start my new job, I had a positive pregnancy test. I had always wanted more children, but I confessed I thought, "Now, God?" At my 20 weeks scan we found that we were having a girl and she had a cystic hygroma that was very large. I refused an amniocentesis because I didn't want to endanger her any further.The perinatologist suggested an abortion."

At 24 weeks, she was not worse. At 26 weeks, he suggested that she had Trisomy 13 or Trisomy 18, both generally fatal chromosomal abnormalities. Her mother was heartbroken. At every appointment after that he again said that he thought she was a Trisomy baby. At 34 weeks, her mother developed preeclampsia and was induced. Isabella was born weighing 4 pounds 2 ounces. She was able to breathe room air shortly after birth. Her mother writes, "When the neonatologist came to say he thought she had Turner's Syndrome, he was surprised that I was so happy. That was the first time that I thought I would get to keep my little blessing." She stayed in the NICU for 11 days and came home.

Isabella is now a bright, funny 3 year old that is the joy of her family. She loves to sing. She dances with "Angelina Ballerina." She's the light of our lives!

Adele Mikayla - 6 months

Meet Adele, Northern Canadian baby girl! Diagnosed with classic Turner Syndrome. She received extra help from miracle workers at Children's Hospital the first month of her life. Although she's been through a lot (heart surgery at 4 days old), she continues to thrive and have that cute little smile on her face everyday! She is loved and admired by all in her life. Adores big sister, Riley. She absolutely capitalizes on cuddle time and already expresses such passion and love through kisses and caressing faces hehe. She is definitely a little lover. Her mother writes, "My treasure, my joy!"

Tiegan Rae - 3

Tiegan Rae is 3 years old. She was diagnosed in utero at 21 weeks. She had open heart surgery at 6 days old for a coarctation of her aorta and has also had surgery on her throat and ears. She has some hearing loss and this year got her BAHA band. She is learning more every day. Her favorite things are Minnie Mouse and kitties. She is mommy's true miracle.

Sienna Rain - 7

Sienna is 7 years old and in the 2^nd grade. She was diagnosed at 4 years old with Mosaic TS and started GH at 5 years old. She has grown over 7 inches and gained around 9 pounds since starting the GH. She is an athletic little girl who got a new pony this year! She has been riding since she was 5, and this year we moved to a house where we could keep our horses! Sienna goes to riding lessons at least once a week, is in swimming lessons a few times a year and was part of a running club at school this year that ended the season with a 1.25 mile run! She has a horseshoe kidney, has had tubes in ears 4 times now, her adenoids and tonsils out, and wears glasses. She tells her mom that she is going to grow up to be a horse worker and asked her if she could go to college to learn about horses!

Emma A - 2

Emma is a 2 year old Turner Syndrome miracle. She was diagnosed with Classic TS at birth. She's such a happy and caring girl. Love her personality, always willing to give hugs and kisses. Very friendly with people. Has so much energy and loves to eat. She had tubes put in 8 months ago. She has been on Growth Homrone for 1 yr and she's growing! She loves to watch Mickey mouse club house and Dora the Explorer, and dance and clap her hands. She is currently potty training and doing great. She knows how to say her name and a few words. She also receives physical, occupational and speech therapy.

Abby - 2 years 9 months

Abby is 2 years and 9 months and full of life and energy! She is constantly on the move and is learning something new every single day. Abby was diagnosed with Classic Turner Syndrome a few weeks after she was born, but we continue to marvel at how "normal" her life has been ever since. She started her growth hormones this past fall and has seen significant growth on them to date, jumping all the way back onto the normal growth charts! Her mother says, "Abby is such a delightful child; a miracle we thank God for continually."

Destanee Grace - 6 months

Destanee Grace was born on August 16, 2013. She was diagnosed with Classic Turner Syndrome at 15 weeks gestation by an amino done after the discovery of a cystic hygroma, pericardial effusion and fetal hydrops. Her mother was told she would not survive and was given an option to abort. Immediately she decided she would not and she would give her little butterfly a chance. She is such a fighter. She has a multicystic dysplastic kidney, bicuspid aortic valve and has no ovaries. she loves to smile and is such a happy baby. Her mother says, "I can't wait to see what our future has in store for us!"

Juliana Grace Rose - 2-1/2

Juliana's pregnancy was very tough. We were given the news that she had a cystic hygroma, fetal hydrops and multiple heart defects when I was 17.4 weeks pregnant. She was given 1-3 weeks to die in utero. We were devastated and chose to have an amniocentesis done. 2 days later I found out she had Turner Syndrome and that if she survived could have a decent quality of life. We chose to pray, pray, pray and on June 2, 2011 Juliana made her dramatic appearance just over 4 weeks early! She was transferred to U of M hospital to have open heart surgery on June 6, 2011. She was in the hospital for 5 weeks and has been home ever since! Juliana still has heart defects that we monitor on a regular basis. She takes heart meds daily. She also has had some issues with her ears, she has had and still needs multiple surgeries. She now wears hearing aids. You would never know that she has and still is battling so many health issues. She has the most energy and spunk of any little girl you will ever meet! She is kind and humorous! Her favorite people are her big brother Will and little sister Gabriela. I thank God everyday for Juliana's life!

Addison - 2-1/2

Our daughter Addison was born August 22, 2011. She was four weeks early weighing 3 pounds 14 ounces and 16.5 inches long. I found out in utero through an amnio that she had TS. She was measuring small on the ultrasounds , so the doctor suggested something was wrong and to do an amnio.

I really didn't know what to expect or if she would even make it, but she did! She was evaluated in the NICU and they noticed a blockage in her small intestines. She was transported to Children's Hospital of Atlanta at Eggelston. She immediately had surgery to have the blockage removed. Unfortunately, a week later the suture broke and they had to do surgery again. This time an illeostomy was put in and she had a bag for 6 more weeks. She was reconnected and we left the hospital after 80 days. We had lots of doctors appointments but she she was healing and growing. We did deal with severe reflux but by 9 months she stopped! She does not have a COA nor has she had one ear infection or problems with her hearing. We had physical therapy twice a week to help with her gross and fine motor skills. I give thanks to the therapist because she hit all the milestones on time and has never given up.

Flash forward to January 2014! She is almost 2 and a half bright , bubbly little girl that makes us so happy. She loves to eat! She could sit for hours and look at books or have them read to her. She knows her ABC's, colors, can count to 5, and knows most of her shapes. She loves to play and never meets a stranger! She also loves her baby sister. Everyone is drawn to her smile and outgoing personality. She is strong willed and never gives up on anything she tries. This is the child I always dreamed of when I thought I would have one. She is perfect and I love her so much! She brings so much joy to our family everyday.

Olivia - 3-1/2

Olivia was "accidentally" diagnosed with Turner syndrome at 5 months old. She was in the NICU at the Children's Hospital of Philadelphia for her first 6 weeks, fighting for her life from an unknown illness. As quickly as she got sick, she just started getting better. While doctors were searching for a cause of her being so sick and having multi organ failure, they did a chromosome test and discovered she had mosaic Turner syndrome. It didn't explain her symptoms at birth, but we felt so fortunate to find this out so early on in her life.

Olivia is pretty healthy, and just struggles with speech delay, mild learning disabilities and frequent fluid in her ears, which requires tubes. She is small for her age, but is still in the 75th percentile for height according to the TS growth chart! She will be starting growth hormones when she turns 4, in September. Olivia has a special light around her. She makes everyone she meets smile, and we know that there is a special plan for her in this world. She is truly out little miracle and a great gift from God.

Danielle Magdalene - 7

Danielle Magdalene is 7 years old. She was diagnosed with Mosaic Turner Syndrome at birth and also had surgery at 3 days old to correct a Congenital Diaphragmatic Hernia. She stayed in the NICU for 60 days. Shortly after bringing her home, she experienced ear infections which resulted in placing numerous sets of tubes in her ear within a 3 year span. She also had her Adenoids and tonsils removed at age 3. She wears a hearing aid in her right ear due to moderate hearing loss. Danielle has always been tiny compared to other children her age. She started Growth Hormones last summer and she has grown 4 inches and gained 20 lbs. She is in the first grade, and she loves school and making new friends. She loves to dress up and to sing and dance. She has been through so much but you would never be able to tell because of her fighting spirit!

Katie - 11-1/2

Katie was diagnosed at age 9. She is the youngest of 3 children. She has 2 older brothers, but she can handle herself. She has had 5 sets of tubes, tonsils and adenoids out. We only found out due to she wasn’t growing like kids her age so they did blood work. They found out her thyroid was low so they put her on meds for a year to hope that would help and sent her to Endo. After that didn’t help they did more blood work and found out she has Turners. She was full term and 7 lbs 2 oz. She enjoys Cheerleading. She is getting ready to be tested for hearing aids.

Ainsley and Aubrey - 3

aka: The Tinkerbugs 3yrs old

These two are identical twins that happen to have mosaic Turner Syndrome, making them the least identical looking identical twins we've ever seen. (In our opinion anyway).

Watching these two grow over the past three years has been incredible! The first year I was scared of everything, they were constantly sick, barely growing, continuously at the doctors, therapy three times a week, it was so overwhelming! They were worth every second of it, but I won't lie, I was overwhelmed.

The second year was more of the same, but they became mobile and started to make progresses in areas that I wasn't sure we would see, like Ainsley is amazing at running and climbing and jumping. The second year closer towards the middle, Aubrey took off in speech! Sometimes her words are still a little hard to catch but for the most part she never stops talking and we got a kick out of telling the doctor No, she speaks in 6 or 7 word sentences when asked if she combined 2 or 3 words at her last appointment. :)

This third year is proving to be even more fun & challenging (come on its 3)! So far they've begun preschool and got their alphabet, colors, and numbers to 10 down. Ainsley just rocked the potty train, but Aubrey is really overwhelmed by it so its taking a little longer. We will get there, this is a time where having a tiny heiney is an awesome advantage!

These two are amazing little girls, they have the tenacity and courage of people 10x's their size! If I have anything to do with it, they will keep that quality! These beautiful girls have brought us some great friends and extended family into our lives! We've enjoyed watching all of these beautiful children and so many more grow. I wouldn't change a thing about my girls, they were made exactly how they were meant to be!

Lily - 2

Lily's parents first became aware of Turner syndrome when a 12mm cystic hygroma was discovered at 12 weeks gestation. She was diagnosed with Turner Syndrome at 16 weeks gestation. Lily's parents were told she would not survive past 20 weeks, but she did! She had coarctation of the aorta repair done when she was 2 days old, and came home when she was 12 days old. She has had tubes placed for frequent ear infections, and had tonsils and adenoids removed due to obstructive sleep apnea. Lily started growth hormones last spring and has seen some growth improvement, but she makes it known that although she is small, her spirit is not! Lily is a joy to everyone who knows her. Her smile is contagious, and her giggles brighten the day. She loves Bubble Guppies, Paw Patrol, and Dora, and enjoys causing trouble with her Irish twin, Sage. Lily looks up to her big brother, Schuyler, and loves to play outside, even if "outside is cold." Lily enjoys participating in family yoga practice and loves to snack all day long. She is amazing, we love her to the moon and back and we are so grateful we are blessed with her miraculous life.

Brissa - 10 months

Brissa was diagnosed with Turner Syndrome at 16 weeks pregnant by an amnio she also has a congenital heart defect called hypoplastic left heart syndrome with intact atrial septum, and she was in the hospital for almost 7 months! She had her first open heart surgery at two days old. Brissa has had many complications after that surgery but she is a fighter and did recover. On 09-25-13 she had her second open heart surgery and she recovered very well, finally on 10-15-13 she was able to go home and enjoy the warm love of her family and of course her mommy. Her future surgery will be the fontan which will also be her third one. She has a permanent pacemaker, for now she is on oxygen because she has pulmonary hypertension.she loves when mommy sings to her and she is beginning to grab her toys, after all she is being through and even though the doctors always said since the beginning she wouldn't make it she smiles all the time. Her mother writes, SHE IS MY MIRACLE I LOVE HER WITH ALL MY HEART."

Eliana Grace - 3

Ellie is 3 years old and lives in TN. She is a bright and very normal child who enjoys dancing, homeschool, stories/books, and anything involving Mickey Mouse.

She loves to go to church and especially enjoys playing with her friends in the nursery. Ellie is very social and is like a ray of sunshine to all who know her. She is not the average height of her peers, however, she is growing at a fairly normal rate without growth hormone at this time. While she has some sensory processing issues, and a vascular malformation in her foot, she is a relatively healthy child who enjoys a normal lifestyle.

Her mother writes, "Ellie is most certainly our blessing, our testimony of God's grace, and we know the Lord has great plans for her one day!"

Ryann - 7

Ryann is doing great. She is 7 and in a life skills class at school. She wears hearing aids and leg braces, but nothing slows her down! When the psychologist asked her what she wants to be when she grows up she responded "I am going to be a pirate and sail the seven seas!" Yo Ho Ho! The best is that it is in the actual medical report!

Jillian - 4

Jillian has a twin sister named Lainey who does NOT have Turner Syndrome. They were born at 31.5 weeks. They were in the NICU for 3.5 weeks and came home. Just as we were adjusting to the life of preemie twins I noticed Jillian just stopped growing. She was always a bit smaller than Lainey but by 8 months old she was a lot smaller than her twin sister. They were eating bite for bite of baby food but Jillian wasn't growing and Lainey never stopped. So I took her to our pediatrician who did blood work and all was normal. With a follow up a few weeks later, she'd only gained a couple ounces so he sent us to a Geneticist. He examined her and did a karyotype and that's when we got the news...Turner Syndrome...I was devastated, especially after researching the odds of these miracles making it to term, and the news of no biological children for her. But, at the same time we realized how blessed we were that we had her, both of our girls! She had beat the odds and we just had to push forward and do whatever we needed to do for her. After specialist after specialist we got all of the "details" of her condition. She had an almost 1/2" hole in her heart, called an ASD. It isn't the common heart defects of TS but she had it and had open heart surgery just before she turned 11 months old to fix it. She started GH at 28 months old. She is a very loving, bright, smart little girl. She is high of life all of the time and doesn't miss a beat!

Kessleigh - 3

Kessleigh is 3. She has been on growth hormones for a little over a year and is doing so well! She has not been hospitalized in over a year and is much healthier now than just a year ago. She is currently seeing a Gastro to determine what is going on with her stomach and also sees an endo every 3 months! She is such a blessing to everyone she meets and she is truly a miracle!

Emory - 19

Hi! I'm Emory. I'm 19 and was diagnosed with classic TS at birth. I'm currently a freshman in college. I love concerts and movies. I'm just a country girl at heart!

Emmry Adelynn - 2

Emmry Adelynn was born 9/16/11. We were completely unaware she had Ts (45X) until she was lifeflighted immediately after birth due to a COA and PDA of the heart, she was labeled failure to thrive, with horseshoe shaped kidneys and had partial hearing loss. She was also born with an omphalacele, and doesn't have a belly button because of it. She was supposed to have open heart surgery, but with medication her heart healed and now we Just follow up. From the start she saw 3 specialists a week, for her severe lymphedema and developmental delay, but now with lots of love, breastfeeding, good food and monitoring all negative signs we avoid as many doctors as possible. She has had lots of issues with her ears and behavior, but we wouldn't change our miracle for anything. She is just the way God intended her to be and we don't believe in changing one thing about her. Go, Emmry, Go!

Happy Second Birthday Lily

noreply@blogger.com (Sarah - Fat Little Legs) — Mon, 16 Sep 2013 12:00:00 +0000

As I sit here on the eve before my daughter's second birthday, I can't help but feel a mixture of emotions:

Joy

Awe

Thankfulness

Wonder

Blessed

And on the flip side:

Fear

Exhaustion

Stress

Weariness

Anger

I can't help but reminiscence about this night 2 years ago. The night before I met my living breathing miracle face-to-face.

I remember that night listening over and over to a the song, "Never Let Go" by Matt Redman.

"Even though I walk through the valley of the shadow of death, your perfect love is casting out fear, and even though I'm caught in the middle of the storms of this life, I won't turn back for I know you are near. I will fear no evil, for my God is with us, and if my God is with us, whom then shall I fear, whom then shall I fear. Oh no you never let go through the calm and through the storm..."

And God... he never did let God. He still holds us with his mighty grip, nearly 2 years later. My beautiful miracle, Lily Grace made it from my womb into this world. And she has grown into your typical 2 year old. On the outside, a passerby on the street might notice she looks like a 18 month old, but that's about it. They wouldn't be able to guess her story. They would never know.

And yet on the inside, there are things we have to deal with daily, that most parent's don't. There is the daily shot, there are the nearly weekly at times doctor's appointments. There are the 3 surgeries within the past year. There is the stress of the doctor's bills adding up, an there are the fears of the "what ifs". Yet at the same time, there is the wonder.

She runs

She plays

She dances

She sings

She throws tantrums

She smiles

She frowns

She laughs

She cries

She repeats everything and asks for things in compound sentences

She lights up a room when she walks in, and she demands the attention of anyone willing to even glance her way.

She loves Elmo and Sesame Street.

She loves Bubble Guppies.

She loves to swim and play "side" (outside)

She loves trains

She loves dolls.

She loves any and all music.

She loves fruit and cheese and hot dogs

And I hear her now in her room singing Happy Birthday to herself. Because that is exactly who she is.

She makes me smile and cry all in one.

She is amazing!

And even though I feel some of the negatives tonight just hours before she turns 2. It is overshadowed in every way by the beautiful little girl she has become. I am humbled to be chosen to be her mom. And I am not lying for one minute, when I say I am so happy I was chosen for this journey.

So tonight Lily, I remember those last few painful and fear-wrought hours before I met you, and kissed... if even just for a moment your beautiful face. I pray that God will make you grow - both physically, and in him. That he will protect you, and he will continue to mold you into such a beautiful part of His creation. And I pray that me, as your mother, will be ever so patient, will have discernment when it comes to your health, will not be beat down on days when things don't go as planned, and will never ever forget what an amazing miracle God worked through your life.

Happy Birthday Princess! I love you.

Our Beautiful Butterflies - Take Two

noreply@blogger.com (Sarah - Fat Little Legs) — Mon, 04 Feb 2013 13:15:00 +0000

Last year I had an idea. An idea to show the world what Turner Syndrome looks like. To date, it is and remains my most popular post ever. A fact that I'm both amazed and proud of.

February is Turner Syndrome awareness month, and Lily and I wanted to do something to help spread awareness. Awareness of what Turner Syndrome is. Awareness to the just diagnosed, that this does not have to be a bad thing, and hope to the expecting mother, carrying a precious baby with Turner Syndrome, that this will be a journey that is worth any hardship.

The butterfly is the Turner Syndrome symbol. The TSSUS chose the butterfly because the butterfly is feminine yet strong, every butterfly is unique, and butterflies fly on their own which is our hope for our girls. I think it fits so well because butterflies may at first glance appear fragile, but are truly strong and beautiful, just like these girls!

Over the past year I have learned to know many of these girl's mothers, and some I have formed life-long friendships with. And again, putting this post together this year, I have been moved to tears many times. Last year I learned that Lily and I are not alone, this year I know we have an entire support system to lift us up whenever and wherever we need it.

My hope is that you'll share this post as much as possible. Please post it to your facebook, tweet a link to it, email it to your family, friends, your local media. Alone I'm just a single blogger, but together we can make a difference!
So without further explanation here are our beautiful butterflies - 45 chromosome princesses of all ages, they are many and varied, they are miracles, our one percents!

Sajda - 23 months

Sajda is the youngest of 5 children. She has 4 older brothers, but she doesn't let that slow her down!

She has Mosaic Turner's Syndrome. She also has a congenital heart defect, Pulmonary Atresia with VSD. She had open heart surgery for it at 5 days old but is thriving right now. She will need another surgery in a couple years to replace her conduit. She is learning to sign some words, along with learning to speak some words in Kurdish and English. Her favorite toy is her baby dolls. She continues to be a source of joy to everyone she meets. And is rarely without a smile.

Kessleigh - 2 years

Kessleigh was diagnosed at birth. Unfortunately she has a bad immune system and has been hospitalized 9 times for various sicknesses. She started growth hormones just this past January! Despite being tiny, she appears normal and happy!

Mya - 19 months

Mya was diagnosed in utero via amnio which was performed due to concerns with blood tests and ultrasounds. Mya has had 2 eye surgeries to correct tear duct issues, and still needs at least 1 more. She has also had 2 ear surgeries due to chronic ear infections, which she is still battling. She started growth hormones back in July and is growing well with the extra help! Mya is happy, loving, caring, extremely smart and slightly wild, thanks to four older brothers. Her mother says, "We adore our little miracle more than words can express and can not wait to see what is in store for our future."

Ainsley and Aubrey - 2

Ainsley and Aubrey are identical twins with mosaic Turner Syndrome. Smart, funny, feisty, and always on the go. They love singing, dancing, playing at park, and reading stories. Their mother comments, "I've said it before and I'll always say it they may be tiny but they are definitely mighty! They are just amazing and bring us all so much joy!"

Juliana Grace Rose - 19 months

Juliana Grace Rose was born 6-2-11 after a very complicated pregnancy in which are parents were told she would never survive. She had open heart surgery at 3 days old but is doing fantastic now. She is funny, energetic and is the light of her parent's life. She absolutely adores her big brother Will and is fascinated by her new baby sister. She is already a little mother herself! She loves "Baby Signing Time" movies and is learning all the signs. Her mother says, "I can't imagine our lives without our little miracle girl!"

Brooke - 6

Brooke was diagnosed at 22 months with Turner Syndrome and Systemic onset Juvenile Idiopathic Arthritis. When she was born her parents had no idea she had Turner Syndrome. She did not show any signs or have any outward appearances of anything being wrong. Looking back, she had a few signs: she was small, had chronic ear infections and had texture aversion and could not handle anything with texture without gagging and often times vomiting. However, her parents did not find out about the Turner Syndrome until she became deathly ill with Systemic onset Juvenile Arthritis, an autoimmune disorder. Cancer had to be ruled out so a bone marrow aspiration was done. That is how they found out about the Turner Syndrome. Her mom says, "She is the light of our lives." She enjoys ballet and loves her kitten Bella.

Eliana Grace - 2

Eliana, whose name is Hebrew and means "My God has answered" has Classic Turner Syndrome. It has been confirmed she is missing one X chromosome from every cell of her DNA. She was born with a mild heart defect--biscuspid aortic valve--but currently is experiencing no issues. Eliana is tiny for her age, but is mightily equipped with her quick wit, strong sense of humor, and advanced verbal skills. Her only "issue" to date is a rare, vascular malformation in her foot. She is otherwise healthy, and is a happy, vibrant child!

Kiarra - 16 months

Kiarra was diagnosed when her mom was 5 months pregnant through an amnio. She was asked if she wanted to abort her, and says, "I'm so glad I gave my butterfly a chance at life we love her with all our heart and soul!"

Lily Brigid - 15.5 months

Lily was diagnosed with Turner Syndrome at 16 weeks gestation by an amnio done after the discovery of a cystic hygroma at 12 weeks. She had coarctation of the aorta repair done when she was 2 days old, and came home when she was 12 days old. Now, Lily is the most amazing little girl. She is cute, funny, and has a great sense of humor already. She just learned how to walk today. She loves her brother, sister, mom, dad, and grandparents immensely and is always giving hugs and kisses. Lily is smart too- she is learning baby sign language and is doing great! Her mom says, "Every day I look at her and smile, knowing she is proof that miracles do happen."

Kenzie Grace - 15 months

When Kenzie's mom went for her 20 week check up, she was told that her baby had fluid behind her skull, fluid on the tops of her feet, and fluid in her heart. The doctor mentioned that these things were markers for a genetic disorder. After essentially telling them that their daughter would likely not live, he said "because you live in NY state, I have to give you the option, would you like to terminate the pregnancy?" Kenzie's mom says, "There was no hesitation in our definite NO!" They went home to cry and to pray, and beg God to let their baby live. Psalm 27:13-14 became her verse for Kenzie "I am confident of this , I will see the goodness of the Lord in the land of the LIVING. Wait for the Lord, be strong and take heart and wait for the Lord." Kenzie was born 3 weeks and after a week in the NICU it was finally determined that she had Turner Syndrome. Her heart only has a bicuspid valve, it had a small hole, but God healed that! At 15 months she is a peanut - never on the weight curve, and she had a slight gross motor delay, but after a few months of PT she is almost walking! She says so many words and has such a spunky personality and is the biggest snuggler! Her mom says, "I have learned many things through all of this. your daughter has Turners Syndrome, this is not who she is. This will not define her, or you. Each of these girls is unique and special and beautiful."

Emmry Adelynn - 16 months

Emmry was born on on the exact same day and year as my Lily - 9/16/2011 At birth her parents did not know she had Turner Syndrome and she was life flighted because she had a PDA and COA along with an omphalocele. She wasn't stable enough for open heart surgery and was unable to eat because of her omphalocele. She was put on ventilators, fats, and all sorts of heart medications to keep her stable and her valves working properly until she was able to get open heart surgery. At a week old she got her first surgery- her omphalocele repair - and within a few weeks she was able to breastfeed again. Weeks passed by and she was still too unstable for heart surgery- more testing was done, her heart had miraculously started working on it's own without need for medication! She could finally come home! She has a wandering eye and strabismus and wears glasses. She also has a horsehoe kidney, and of course is closely monitored because we never know if she'll have more heart issues. She had little to no hearing in one ear at birth, but since having tubes and other therapy for her lymphedema and delayed development she is doing WONDERFUL! Her mother says, "I honestly believe she's been placed in our care for a reason! She's such a loving, funny, sweet and fierce character and I wouldn't have her any other way! She's our Emmry Adelynn- our miracle!"

Ryann Michele - 6

Ryann She survived a cystic hygroma and hydrops in utero! She had a pretty rough start. She was in the NICU for 5 weeks. In addition to Turner Syndrome she has microcephaly, hearing loss, multicystic dysplastic kidney, and Cerebral Palsy. Ryann has far exeeded all of her goals. She never gives up and is a true fighter! She can bring a smile to anyone's face! Her mom says, "We love her to death and are so blessed to be her parents!"

Abigail Louise - 22 months

There was a large Cystic Hygroma discovered during Abby's dating ultrasound at 11 weeks, but Abby's parents waited until she was born to do the genetic testing. Abby has Classic Turner Syndrome (45x). Abby is very fortunate to not have any major health issues normally associated with Turner Syndrome. She is a tiny little bundle of energy who loves her baby dolls, dress up and a good sword fight with her big brothers who are 7 and 4.

Abbey Raelynn - 11 months

Abbey was diagnosed at 13 weeks in utero with a 6mm cystic hygroma. She defied the odds and was born at 39 weeks. She came out a fighter and that still hasn't changed. She has a horseshoe kidney and is monitored by specialist for it. But the doctors say it will be the least of her worries. Abbey has a contagious smile that lights up a room. She is very friendly and loves being around people, especially her family. She is very sweet and loving, and she just learned how to blow kisses! Abbey has two siblings that adore her. She is small, but she likes to try and keep up with her older sister and brother. Abbey has blessed our lives and we are very grateful to have her as our daughter!

Emma T - 19 months

Emma is a 19 month old sweet girl. She is always happy and wanting to give a hug and kiss. She just loves her sister, Erika. She also loves all of her animals. She is an amazing girl that loves everyone and everything. She is always happy! She always lights up the room with her energy and sweetness. There is no one that does not love Emma after having met her.

Emma A - 13 months

Emma was diagnosed after birth due to puffy feet and turned up nails. She has no heart or kidney defects. She's short for her age. She has a 6 year old sister and 11 year old brother, and she loves watching them dance. She is the happiest little girl and has a wonderful personality. She is constantly laughing. She enjoy watching Mickey mouse club house.

Abigail - 2

Abigail was diagnosed with Turner Syndrome at 3 months old and now is a spunky almost 3 yr old with a huge personality and very little fear. Her mom says, "She keeps us on our toes. She is my miracle baby and I would not change a single thing about her." Looking at her you would never know anything was amiss, other than being petite. Her mother says, "I will never let her diagnosis define her. She is beautiful, intelligent and a fighter!"

Ivy - 2.5

Ivy enjoys princesses, baby dolls, Dora and Ninja Turtles.....or anything her brother is doing. She's currently taking growth hormones, but still a head below her peers, but she makes up for it with determination and spunk!

Josslyn - 7

Josslyn was diagnosed at 2. She enjoys learning Italian, doing Capoeira, throwing the football with dad, ice skating, learning to cook, playing video games with her siblings and being like any other 7yo girl. She likes to help spread Awareness about Turner Syndrome and enjoys meeting new TS sisters
and helping others like her.

New Year, New Chances

noreply@blogger.com (Sarah - Fat Little Legs) — Mon, 07 Jan 2013 16:44:00 +0000

If you follow me on facebook or twitter, you'll know that last Thursday was my first weigh in at Weight Watchers since mid December. It was not pretty... not pretty at all.

Up 7.8 pounds!

So with that, looking back on 2012, I managed to lose 8 pounds all year. 8 stinking, stupid pounds. I can just hear you now... at least you didn't gain 8 pounds. True, true, and you know what? You are right. I accept the loss of those 8 pounds, and move on. I weigh less than I did last year at this time, and although I wished I weighed even less, even 8 pounds is win.

All that said, I am not so happy with myself, and just ignoring the Weight Watchers plan since oh... maybe September.

And while it's so incredibly cliche it hurts my teeth. It is a new year, a new start, and a new chance to succeed. It feels good. I got right back to it on Thursday with this weigh in, and I've been making good choices and tracking ever since... even through the weekend. I am starting to get rid of the sugar high I've been on and try to really listen to my body.

2013 - What will I do with it? What are my goals?

My goal is simple, and no its actually NOT about losing weight:
Eat for fuel, give my body the good fuel it deserves, and stop feeding it full of junk.

That's it... it's that easy.

And yet, we all know that it isn't that easy. No... I'm not saying I'm going Paleo, or clean eating or anything like that, but I am trying to eat less garbage, more whole foods, more clean foods, less processed junk.

And I'm hoping in the process I lose more weight. My clothes don't fit, and I have several tubs of 10s and 8s I'd love to be in before 2014 hits! I'm hoping in the process I make it back to my goal weight, and can finally stop paying for Weight Watchers once and for all.

So, the first specific goal I'm incorporating this week, is exactly what the Weight Watchers 360 program is asking us to do: Eat a fruit/veggie as or with every snack. It sounds easy. It's not.
Case in point: Last night, 10 pm on the couch. I wanted ice cream, and no caramel sauce is not a fruit or veggie to add to it. Instead I thought about it for a long time, no rash decisions were made. And I finally decided I could live without ice cream - and I measured myself out a 1/2 cup of cottage cheese, and some mandarin oranges to go with it. It was tasty and satisfied what I was looking for without heading to the ice cream.

So there you have it. My 2013 goal.
Welcome to 2013! What's your goal for this year?

Struggling

noreply@blogger.com (Sarah - Fat Little Legs) — Wed, 19 Dec 2012 22:12:00 +0000

Again... so much I want to say, and so much time goes by as I struggle to get my thoughts into words that can come out of my hands. It never seems quite right. I start post after post and give up on myself.

It simply comes down to this. I AM STRUGGLING.

Lily turned 15 months old on Sunday. I ask myself, how did that happen? It seems like just yesterday she was a few months old, and we were struggling to even get her to drink one measly ounce out of a bottle. Now she scoots around - still not walking but I know we will get there and I'm trying desperately to be patient and not wish her "baby" time away. She eats lots of cheese, fruit, loves books, loves bath, and literally dances to all music she hears. She is a toddler. How did that happen?

And I look at my weight this time last year, and I look at it now. I've managed to lose 15 pounds the entire year. UGH! How did I let that happen? With a 15 month old baby, I should still not be trying to lose the baby weight. I should be at goal by now. Somewhere around fall, I sort of stopped caring, and I've gained about 8 pounds back from where I was (which was down 20+ lbs) since then. And you know what? It doesn't bother me, and that scares me... A LOT!!!!!

I know I shouldn't be so harsh with myself, but I am. You know, that is my nature. And, yet, at the same time it is not my priority right now. I have taken so many steps this year, to find myself again, and to love myself where I'm at, and stop defining myself and my worth by the number on a scale. This has been hard work for me, and huge! But at the same time the downside to this is some of that guilt, some of that definition was my motivation for losing weight, and now here I sit, less than a week before Christmas, and I will admit it is official - I have lost my motivation. I don't have pounds to lose because I want another baby, and there's really no special events on the horizon, or clothes I want to fit into (I gave up thinking of my size 8s a long time ago). I've really got nothing.

I've seen the insides of way too many fast food drive thrus in the past month.
I've grabbed way too many second helpings of food.
I've eaten so few fruits and veggies.
I've helped myself to snacks and candy I would have never before considered worth eating.
I've done nothing in the form of exercise except maybe haul in groceries from my car, or carry around Lily.
I've made fudge and 10 different kinds of cookies, and I've eaten them.

I'm struggling, and the further I get down, the less I know of how to make it all stop. I get into an all or nothing mode, a give up mode, and I just throw up my hands up and head to the nearest fridge, cupboard, drive thru, vending machine...

I have so many other things to think about - no that's not an excuse - I don't do excuses - it is however a reality. Lily has at least 1-2 appointments a week, I work 40+ hours a week, and every night I have to load up a needle and stick it into my precious baby's leg. That alone has me shoving a few extra cookies and an extra glass of wine for good measure into my gullet.

And really, I have nothing else to say.
I'm here.
I'm struggling.
I'm not sure how to move past this.
Any ideas? Let me know. I'm all ears.

My Family is Thankful For...

noreply@blogger.com (Sarah - Fat Little Legs) — Fri, 16 Nov 2012 13:56:00 +0000

Yes, I've disappeared, and I did want to pop by and let all of you know that I'm OK, Lily is OK. In the last 2 months, I've simply become overcome with work, and something had to go. I have missed writing, and so much has happened that I want to share. I'll be done with this craziness after November and I hope to begin posting regularly again!

I do post to facebook, even when I'm not posting to the blog, so come over and like my page!

As we inch closer and closer to Thanksgiving, I wanted to share with you what my 5 year "L" did for his homework last night. We had to talk about what it means to be thankful, and then we were supposed to decide together what our family was MOST thankful for. A pretty big task for a 5 year old. Anyways... I asked him what he thought our family should be most thankful for, and he came up with this completely on his own.

This boy makes my heart melt with his love and empathy for others.

Many blessing for Thanksgiving to all of you. I pray for you that the God that has blessed my family so immensely has also blessed yours, and you take time to reflect on everything you have!

Breaking My Silence

noreply@blogger.com (Sarah - Fat Little Legs) — Thu, 04 Oct 2012 13:25:00 +0000

Wow, I can't believe it has been so long since I last wrote. I guess I wanted to keep Lily's birthday video up as long as possible! I hope you enjoyed it. Her birthday party was amazing... fit for a princess with lots of friends and family to help her celebrate. There will be pictures coming. I promise!

Since then things have been crazy around here. There were the 1 and 5 year old appointments to be had for both kiddos. And we've all been sick. Tuesday was actually the first day in a week and a half that everyone was back at daycare/school/work!

On top of it all I've been working, working, and working some more. And so... the blog and sadly Weight Watchers in general has been a ~~little~~ a lot neglected. I'm lucky that I'm holding steady, but I've been around the same 2 pounds - still 20 pounds to go back to goal - now for pretty much the entire summer. I need to break on through, and at the risk of sounding like I'm making excuses, I just can't seem to make it happen right now with all the extra "stuff" going on. Weight Watchers before Lily, and Weight Watchers after Lily is sure a different experience.

Initially I was so "not OK" with that. I was angry with my results. But I've come to accept that this is a different journey than it was before, and this time it is going to take me longer, and so I've made peace with that fact, even if I still feel frustrated at times.

Next week, I am off to North Carolina again for appointments with Lily - similar to what we did back in April. Lily and I will be taking a little vacation after the appointments to the beach. We are so ready for a break, and some time in the sand and sun.

My vacation plan is to simple and something that CWWL (Crazy Weight Watchers Leader if you need a reminder) taught me. If you are simply replacing a "normal" meal that you'd eat, eat like you would at home. If it's a celebration, than take the time to eat what you enjoy. I think that's amazing advice for a balanced life!

Happy Birthday Lily

noreply@blogger.com (Sarah - Fat Little Legs) — Sun, 16 Sep 2012 12:36:00 +0000

Baby girl. Today you are 1. It seems like just yesterday that after weeks, weeks of waiting and waiting to see what would happen with you, that you were finally born. All the worry and prayers wrapped up in a tiny little 5 lb 9 oz package. You were perfect! OK, so you were missing 1 chromosome, but you had a perfect little heart, a perfect little face, your mama's nose.

Our healing came, all the while other mama's didn't get their healing. Our miracle was granted, and I will never understand why us... why you. You are made for bigger things baby girl. You will do amazing things. How I was ever worthy of being your mama I will never know. I am blessed beyond measure, and I am humbled to have been chosen.

You amaze me every day. You are standing up to things and cruising around, you have 4 teeth. Last night you told your daddy you were "awe done" at the end of dinner. You already hate bottles and love your sippy cup and "real milk".

Today we celebrate you Lily! Something I never thought I'd get to do. God is so faithful!

On your birthday there isn't much more I can think of saying that I haven't already said somewhere over the past year. So instead I put together this video... chronicling your story. My wish is that it is shared over and over until it goes viral. That everyone can know how great is our God!

And don't forget you can still donate in Lily's honor to the Turner Syndrome Society

I Still Would Have Chosen You

noreply@blogger.com (Sarah - Fat Little Legs) — Tue, 11 Sep 2012 12:47:00 +0000

Some days I can easily come up with my own words, and some days, things I read so eloquently say what my heart is feeling. Recently, a fellow Turner Syndrome mom shared this poem, and it so accurately captures my feelings of the last year with Lily.

Despite everything. The 18 weeks of living with her growing inside of me, not knowing if she'd live, the reflux, the hundreds of appointments, the sleeplessness nights, the millions of tears cried, and 2 surgeries. I would not trade Lily for anything. If I had my pick - I still would have chosen her.

I Still would have chosen you

By Terri Banish

If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you.

If God had told me, "This soul would one day need extra care and needs", I still would have chosen you

If He had told me, "This soul may make your heart bleed", I still would have chosen you

If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you

If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you

If He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you

If He had told me, "All that you know to be normal would drastically change", I still would have chosen you

Of course, even though I would have chosen you, I know it was God who chose me for you.

And don't forget... Lily is asking you this week if you would please give a small donation - even a dollar can make a difference - to the Turner Syndrome society for her birthday!

Give For Lily - Birthday Week

noreply@blogger.com (Sarah - Fat Little Legs) — Mon, 10 Sep 2012 12:15:00 +0000

It's officially birthday week! Yes, you read that right. My baby girl turns 1 on Sunday. Can you believe it's almost been a year since my baby girl made her miraculous entrance into this world? It is only because of so many prayers - many from you guys reading this - that Lily was healed and made her very feisty and live appearance into this world. It's certainly a day I will NEVER forget. And I'm ready to party!!!

I'd love to "invite" you to a virtual birthday party for Lily. You can be a part of Lily's special day.

Lily would love nothing more than if you would take a few moments of your time and a few dollars in your pocket, and in honor and celebration of her first birthday, donate to the Turner Syndrome Society.

It's easy and safe. You can go here to donate. Or you can just click the "Donate" button that I've added to the right side of my blog.

Please feel free to share this opportunity to give back to Lily with friends, family, coworkers, strangers... whoever! Tweet it, share it on facebook. This little girl deserves it. Remember that no donation is too small and even one dollar can make a difference!

Do it for this sweet face.
Lily thanks you and we thank you!

The birthday countdown is officially on!

And if you don't know what Turner Syndrome is please take a moment to read Lily's story.

Another First

noreply@blogger.com (Sarah - Fat Little Legs) — Wed, 05 Sep 2012 03:16:00 +0000

Today was my "baby" boy's first day of Kindergarten!

It is unbelievable to me that 5 years ago tomorrow (September 5, 2007), after 27 days in the NICU we finally brought him home for the first time from the hospital! He was a mere 4 lbs 5 oz the day he was discharged. I can see it all in my mind still when I close my eyes!

"L" - 1 day old - 3 lbs 4 oz

In the first 5 years of his life, there have been so many firsts. And today was yet another first, and another reminder to his mama that time passes so quickly when we aren't really paying attention.

"L" - 9/4/12 First day of Kindergarten

I barely will have time to wipe the tears from my eyes, and I'll be celebrating another first - Lily's first birthday in a week and a half. Right before my very eyes, my baby girl is turning into a toddler.

So tonight, my heart is swelling with pride at the amazing first that happened today, and the amazing first that will happen in less than 2 weeks, but at the same time my eyes are filled with tears.

Time... slow down!

Life, so amazing! Life, so blessed! Life, so fleeting.

A Bit Like Frankenstein

noreply@blogger.com (Sarah - Fat Little Legs) — Fri, 31 Aug 2012 02:37:00 +0000

The spot is gone!
Lily came through surgery beautifully, and we were home by noon yesterday! God is so good!

I'd be lying if I didn't admit to having a bit too much fear gripping me yesterday between about 7:30-9:00 am. I started out so calm, I stood beside her during all of the pre-op preparation. I signed her life away on the release form, and a nurse held out her hands for my baby. It all happened so fast, and there they were walking down the hall to the OR with her, and I saw her waving and smiling the whole way, giving doctors and nurses "five". That was the last time I would see the spot. The last night I would see my daughter exactly as she was born.

The surgery was projected to take around an hour. About an hour and 15 minutes in, I suddenly felt like I was going to lose the muffin I had just eaten. I had about a thousand thoughts rushing through my mind, all of the "what ifs", a lump in my throat, I looked at my husband with fear, and said, "What do you think is wrong?" Luckily, it was only about 5 minutes of pure panic, until the receptionist came over to me, and said they were in the process of closing up, and the surgeon would be out to speak with us shortly. It was enough of an update to get me through the next 15 minutes or so, without completely losing it.

Lily's surgeon was a kind man. He assured us everything went great. I had to ask him the question, I so desperately wanted to know. I asked, "What was it?" He assured me it was indeed exactly what many doctors before told me it was, simply fat, skin, and tissue that had collected as part of her hygroma. Likely left when it ruptured around 28 weeks. He told us that we'd be allowed in recovery in about 10 minutes, and just like that it was pretty much over with.

I breathed for what seemed like the first time that morning.

We waited another 10 minutes or so until we were ushered back to see her. She lay on the bed all hooked up to wires and an IV. The nurse introduced himself and said that I could hold her. I sat down and he handed her to me, and what I saw next amazed me: the back of my daughter's head, not beautiful and perfect like I had imagined so many times in my head it would look like when the spot was gone, but horrible, and scarred, and bloody, and huge! The incision ran from the middle of her neck, to the middle of the back of her head, it was oozing puss and blood, it was big- probably 5+ inches long. I felt my breath catch. This... this is not what I expected to see. Even though I knew my daughter was having a large spot removed off the back of her head, I had somehow blocked out the reality of how that would look, and replaced it with an unrealistic image of beauty.

There were a few moments in that recovery room yesterday that I regretted all of it - that I wished I could get that spot back. That I longed for my baby to be perfect, to be whole, to look less like Frankenstein and more like the Gerber baby.

I know the spot had to go, and I hope and pray that the scar that remains will heal and fade with time - that it will eventually be covered by gorgeous locks of hair!

We are told that because of the size of the incision she will likely need to have a "revision" done to the scar in the next 6 months to a year. The skin needed to be stretched just a little too far, and the middle of the scar will eventually pull apart a little too much. The surgeon will need to cut the old scar out, and create a new smaller scar.

I wanted to be able to move on after yesterday - to put this all behind me. I was unable to do that fully. Sure, the back of my daughter's head looks a bit like Frankenstein, but today it has grown on me a little.

Despite it all I still know that "there are far, far better things ahead than any we leave behind." - C.S. Lewis. Why? Because I am a child of God, Lily is a child of God, and as he's proven over and over again, he knows what he's doing, even if I don't.

The Spot

noreply@blogger.com (Sarah - Fat Little Legs) — Mon, 27 Aug 2012 12:15:00 +0000

I guess it's time to finally tell you that my baby girl is going under the knife first thing on Wednesday morning to have this removed from the back of her head.

Yes... I bet you didn't know that was even there, did you? I've always shared photos of her smile, but not of this, and yet it has been so much a part of who she is for the last 11 months.

This is what is left of her cystic hygroma. This is where they thought her brain was bulging out of her skull. This is the spot that was viewed on ultrasound 27 times before she was even born. And this, as far as I'm concerned is the very spot where God healed her. Physical evidence of the miracle we were granted. Physical evidence of the immensity of the power and grace... and healing of God.

We've been told more times than I can now remember by doctors, nurses, and other medical professionals that no one has ever seen anything like it. At first I wondered why... what is it? What is it there for? But now I am convinced why no one has ever seen anything like it. Because babies that have a cystic hygroma so big and so complex as Lily's are not born alive to be seen with it.

Like I said, the very spot that God chose to heal our Lily. A spot that has represented for the last 11 months what an amazing answer to pray my daughter is.

Sometimes we are asked questions. They usually go something like this:
What is it made of? Fat and skin we are told.
Does it hurt her? Nope.
What is it? We don't really know. The best guess is a leftover remanent of her cystic hygroma, and where it pushed against her neck/head as it grew and she grew.

Initially I wasn't used to the stares. I actually preferred the questions. It's why I love kids... they are so raw and honest. I remember the first time that one of my son's friends approached us to ask about it. It was at the Thanksgiving feast at his daycare. "What is that?", he blurted out. I told him it was just an extra spot that she was born with. Next he asked, "Does it hurt?" I quickly told him no, and he simply looked and me and said, "OK," and continued eating his mashed potatoes! He asked his questions, and moved on, as if it was no big deal. I wish adults could act that way sometimes.

Finally I got used to the stares. I remember when I used to make sure her head was always facing the back of my arm, so no one would see. At some point, I gave that up, and scolded myself inwardly for being critical of my own daughter. She is who she is, and she is a miracle. If people ask me these days, I simply tell them "Its just the way God made her."

Over the last 11 months I've sort of become attached to the spot. The miracle spot. After Wednesday, it will be strange to find a Lily without her spot. It is so much a part of who she is. I've come to realize that I will actually grieve the spot when it is gone. I know... that sounds so strange, but imagine your child being born with something, living with it for 11 months and then having it taken away within a couple of hours... maybe you can't imagine, and my fingers can't quite find the words right now that I'm looking for.

I know by having it removed though that we are doing the best thing for Lily's future.
Her hair will eventually grow long enough to cover the spot, and just like that the physical evidence of it will be gone.

I however, will raise my daughter to know about her spot, and to remember what it represents - what it stands for - the miracle of life and the power of God.

Please pray for us this week as our daughter undergoes surgery. Pray for peace for us, the skill of the surgeon, and healing for Lily.

Goodbye spot... we will miss you!