Monday, February 16, 2015

Our Beautiful Butterflies - Take 4

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 2014remain 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 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.


Thursday, March 20, 2014

The WHOLE Truth

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 


Monday, February 3, 2014

Our Beautiful Butterflies - Take Three!

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 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 2nd 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!


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