Fat Little Legs

Our Favorite Things - TS Edition

noreply@blogger.com (Sarah - Fat Little Legs) — Sat, 25 Feb 2012 14:30:00 +0000

Here is a list of things that moms of girls with Turner Syndrome have found to be great products to help with some of the day to day things that TS girls cope with. I hope this list is informative and helpful!

Nordstrom

Many girls with TS gave swollen/puffy feet. Nordstrom will let you buy two different sized shoes for the price of one. They offer so many brands and styles so you can find something that will work. You can purchase in stores and online.

Stride Rite Shoes

Many Stride Rite shoes come in wide.
Stride Rite shoes are also sold at Nordstorms (see note above)!

Target Socks

Target brand socks (without cuff). Go up a size and they fit great, don't fall off or leave marks.

Solmate Socks by Socklady.com

These socks stay on, yet don't cut off circulation on legs/feet. They come in fun colors, and are always mismatched!

Buzzy

Most girls with Turner Syndrome will at one point take growth hormone shots. For dealing with the pain that comes from these shots, you can use Buzzy. According this their website Buzzy^® is simply a small vibrating bee with a unique ice pack. Put it near any sharp pain, and presto! Using natural pain relief, Buzzy confuses your body's own nerves and distracts attention away, thereby dulling or eliminating sharp injection pain."

Ear Buddies

Often Girls with Turner Syndrome have some issues with ear shape. I know Lily has one ear that was folded over in the womb by the pressure of her cystic hygroma. These are splits for the ear that help reshape it. The testimonials on the site are very positive and other moms have raved about these. They work best the earlier you can use them after birth. I wish we would have known about these sooner!

Z-vibe

ARK's Z-Vibe® has been used successfully for texture aversions.

See Kai Run Shoes

AWESOME for wide feet! And guess what? Yep. Nordstorms sells them!

Love and Logic: Parenting Kids with Health Issues

I have read this book, and I recommend it, so informative and great ideas for parenting kids that have unique things to deal with!

AK Designs Elegant Baby Shoes

Adorable boots and she will custom make to fit chubbier feet if needed!

Recommendations for all of these products came from real moms of real girls with Turner Syndrome. Nothing was paid by any of these companies to be recommended. I recommend these products because I trust the person that recommended them to me, and/or I love these products myself! These are NOT affliate links. If you click on one and buy something I don't get anything, other than the satisfication that hopefully your life will be just a little easier! We are ALL in this together!

Finally... A Girl!

noreply@blogger.com (Sarah - Fat Little Legs) — Fri, 24 Feb 2012 14:36:00 +0000

Today I have another guest post for you. Today's post is from Eva, mom of Sajda. She blogs at muslimdayz.wordpress.com. Sajda was one of the girls featured in Our Beautiful Butterflies. Today happens to be Sajda's first birthday! HAPPY BIRTHDAY sweet girl!

Even from the beginning, Sajda was different; it started at my 19 week ultrasound where I found out that after 4 boys that I was finally having a girl! Tears of joy ran down my face only to change into tears of fear when I learned 5 mins later that something was not right with her heart. It would be two weeks later that we found out that Sajda had a congenital heart defect-Pulmonary Atresia with a Ventrical Septal Defect (a hole in her heart).

The rest of the pregnancy was hard to say the least knowing what was coming. But we prepared as best we could for what was coming. On February 24, 2011 I went in for my induction at Vanderbilt hospital. I had to deliver there because they had a children’s hospital that Sajda would be transferred to and kept alive till her open heart surgery. The delivery went well and we even got to hold her before they rushed her over to the NICU.

Welcome to the World!

The third difference was Sajda’s weight. She weighed 9lbs 6oz. She weighed 2lbs heavier than my other kids! I always say this was God’s doing because it was what she needed. This is because they ended up deciding that due to her size that she would end up having the complete repair when they did her surgery instead of two surgeries like they initially had planned on. I remember her surgeon telling me how pleased he was with the large size of her branch arteries. I also remember him informing me of the surgery and having to sign the hardest signature of my life to give permission for them to do her surgery. And most of all I remember the hardest day of my life, when they took my 5 day old baby girl to her open heart surgery.

She ended up doing really well with her surgery. And little by little she improved every day. Each day a medicine was lowered, a tube removed. And every day we got closer to going home. Finally at 22 days old, she was finally healed enough and was discharged. They gave us meds for her and she was on a special formula due to her surgery. Ironically the day we went home was March 17^th, St.Patrick’s day (She is part Irish :-) )

Sajda and mom in the hospital before her surgery

At one of her cardiology appointments later we found out her last difference. Our cardiologist had ordered a genetic test to find out if Sajda had a syndrome that caused her heart defect. This is important because it can also indicate other health issues that need to be dealt with. They expected to see DiGeorge’s syndrome because it usually has this congenital heart defect. Instead, a diagnosis of Turner’s syndrome came back. The cardiologist was surprised because this heart defect is usually not seen with it, yet she still felt strongly that the syndrome was responsible for Sajda’s heart defect. She also told us that Sajda had the Mosaic form of Turner’s syndrome, meaning that some of her chromosomes were missing the X and some were not.

Finally home from the hospital!

So far the only issues we have run into is her heart defect, which we will need more surgeries down the road to replace the conduit they placed. Physically, she has the small lowset ears, shield chest, and some of her toes are upturned.

But to us, she is the most beautiful girl in the world. She brings our family and all who meet her so much joy. And we are grateful God gave her to us just the way she is.

Sajda - 1 year old TODAY!

What Goes Down, Shouldn't Come Up

noreply@blogger.com (Sarah - Fat Little Legs) — Thu, 23 Feb 2012 13:30:00 +0000

aka Managing Infant Reflux

When Lily was about a month old, we started noticing that she would have episodes where milk would come squirting forcefully out of her nose, shortly have a feed. At the time I was mostly breastfeeding with some supplementation via the bottle, because of her poor growth.  When it first started I didn't think much of it, but over the next week it quickly got progressively worse, and we ended up receiving a diagnosis of infant reflux.

She was put on 2 ml of Omeprazole once daily, which is just a generic version of the popular stomach med, Prilosec. While the Prilosec did help, it didn’t get rid of the reflux altogether. Over a span of only a few weeks the situation went from bad to worse. By the time Lily was 2 months old she was routinely projectile vomiting full feeds 1-2 times a day! She was fussing at both the breast and bottle after taking in only an ounce. Getting her to eat 1-2 oz was a feat in itself.

At her first endocrinologist appointment, she was referred to a speech therapist for poor feeding. I couldn’t understand how a speech therapist was going to help us, but I was game for anything at that point. I was WRONG! That man was a saint, and he helped us tremendously.

Here is a summary of what I learned from him, from friends that also have babies struggling with reflux issues, and via trial and error. I share this today, because it was a lot of work collecting this information and a lot of pain (on both our part and Lily’s) went into experimentation for what worked best for us. I’m hoping that another family struggling with infant reflux will find this helpful. Also, even though we were told it was not related, the picture I’ve drawn from talking to other mother’s of TS girls is that reflux is very common among these girls. Just another TS awareness fact for you this fine February!

Bottles
We found that the Playtex Nurser bottles – the ones with the disposable bag inside – with the latex (brown) nipples worked best for us. She refuses to suck on anything silicone to this day. The latex is softer. I’m not sure if this is due to the transition between breast/bottle feeding or something else. But seriously, I bought EVERY SINGLE bottle Target sells, and this was the one that finally worked. It was also the last bottle I bought and tried. Murphy’s Law? Not sure. I just know that I was really against the disposable bags for environment purposes. Luckily our garbage company recycles that type of plastic, so they don’t go in the trash!

Ready to Feed Formula
After trying everything from breast milk to soy, and having her projectile vomit it all, we finally found that a ready to feed formula worked the best for us. Best meaning that the projectile vomiting is down from 1-2 times a day to 1-2 times a month! Ready to feed formula is apparently easier to digest than powdered formula, and it is slightly thicker than regular formula, and much thicker than breast milk, which may explain why it stays down better. Please no comments here about how breast is best. I completely agree that breast is best, but it doesn’t work for every mom, and it doesn’t work for every baby. I needed my baby to keep whatever she was ingesting in her tummy, and this is the only thing we found that stayed down. Specifically we use the Gerber Gentle Ready To Feed formula. I’m able to find this at Target, Walmart, and Babies R Us.

Feeding Tips
After working with the speech therapist we discovered that Lily was breaking her seal on the bottle with each suck, especially when she sucked vigorously and at the beginning of a feeding. This was making her inefficient at sucking, and allowing her to suck in more air than she should be. He worked with us to give her support on her chin to try and stop this with a finger just pushing up gently on the tip of her chin.

One of her main patterns was to suck down about an ounce in 2-3 minutes, and then shut down or start to fuss, and refuse to take any more.   Our speech therapist told us that if you put 100 babies in a room with reflux, 80-90 of them would show the same behavior. The stomach at 2 months holds about an ounce, so that is the point where the stomach starts contracting in babies with reflux. Babies can eat more than an ounce, because the milk starts processing through their small intestine immediately as they feed.   We worked to split her feedings into 3 parts, following this pattern:
   -- Feed her until she slows down or stops
   -- Stop for approximately 5 minutes, burp and take a break, giving the stomach time to empty
   -- Repeat x 2

Of everything we tried, this was the most effective at getting her to take bigger volumes, minimizing reflux and spitting up, reducing fussiness.

Medication Tips

The shelf life of most reflux meds is very short. The pharmacy will typically give you a 30 day supply at one time, but by the time you get to the last 1-2 weeks of the supply, the effectiveness of the med is greatly diminished. Ask your pharmacy to authorize the full 30 days from your insurance company, but only make half, then in 2 weeks call them and have them make the other half. We use Target pharmacy, and they have been more than accommodating doing this for us.

If you are giving a med like Prilosec make sure you are giving it on a mostly empty stomach. Prilosec requires stomach acid to work, and it isn't as effective on a full stomach. We also found that if we gave this med immediately after a feeding the full feeding was coming up as vomit all over us!

Beware of Certain Meds and Vaccines

Amoxicillan can flare reflux. I found this out the hard way - by experience. After doing some informal research talking to other moms of reflux babies, it sounds like any antibiotic ending in ‘cillan’ can create issues for some babies with reflux. Ask for something different if you need to use an antibiotic.

Rotavirus vaccine can flare reflux. I wish someone had told me prior to the 2 month vaccines that Rotavirus vaccine (taken orally) would be a nightmare! The following days were some of the worst for us, reflux-wise. I declined the vaccine at our 4 month visit.

Other Tips and Tricks

Other things we found that helped were holding the baby upright in an inclined position for 15 minutes after a feeding, changing her diaper on her side if she had to be changed immediately following a feeding, and preventing any sort of compression on the stomach (i.e. putting the baby on her stomach) up to 30-60 minutes after a feed.

This is all practical advice, that I hope you find helpful, but if you take anything away from this, it is that it will get better. It will seem like complete hell when you are in the middle of it. It will feel like you are drowning in frusteration some days. You might beg with your baby to just “eat” a little more. There will be tears - from both you and your baby, but all of this will pass!

Another Beautiful Butterfly is Born

noreply@blogger.com (Sarah - Fat Little Legs) — Wed, 22 Feb 2012 18:53:00 +0000

A few weeks ago, I received a message from another mother telling me that her unborn baby had Turner Syndrome, diagnosed 13 weeks into her pregnancy. She was currently 34 weeks pregnant and awaiting the birth of her baby. She touched my heart when she told me, "I have read your posts and would like to thank you for sharing them. They have helped us stay positive, but yet be okay with our true feelings sometimes." She specifically referenced this post. Rereading it today, still stings, still makes me cry.

Of course when I found out her baby was born this past week, I asked if I could announce it for her to the world! And so, it is my distinct pleasure to announce today that another beautiful butterfly is here

Abbey Raelyn

Born on 2/18/12 at 1:13 am

Weighing 6 pounds and 5 ounces and is 18.5 inches long

Her mom says, "She is our little fighter and put up a good fight coming out. We are so lucky to have her here!"

Welcome Abbey! We are so happy you made it from your mommy's womb into her arms!
You are gorgeous, and Lily is lucky to have another Turner Syndrome sister. I hope someday our girls can meet face to face.

Do me a favor today... leave a comment for Christy and Abbey, welcoming Abbey! I'll make sure that Christy gets all of them.

Traveling Through Grief

noreply@blogger.com (Sarah - Fat Little Legs) — Tue, 21 Feb 2012 13:30:00 +0000

Today I have the pleasure of sharing another guest post with you. Dana, the mom of Caroline from the Our Beautiful Butterflies post, shares with us her experience through the 7 states of grief. Dana has her own blog over at http://aubreyjane.com Please check it out!

Traveling Through Grief

I am reminded every day that my daughter is a miracle. Everyday I am reminded of all that we have been through in these past 23 months. Everyday I am reminded of the journey that I have taken over these past months to travel through grief and see the miracle in my presence.

I believe that many special needs parents go through the 7 stages of grief. Unfortunately, I don’t believe that we all talk about it or like to admit it. My journey through grief started when I was 9 weeks pregnant and a cystic hygroma was detected, doom and gloom prognosis was given, an amnio was denied by us, and a healthy baby girl with TS blessed and changed our lives forever.

1. SHOCK & DENIAL
Shock is exactly how I would explain that sunny April day in 2010. It was just a random ultrasound because of some cramping I had been experiencing. I took my 14 month old daughter with me to the appointment. I phoned my husband and told him I would bring him a soda when I was done with the appointment. He was having an awful day at work and I thought the soda would brighten his day. At the appointment my 14 month old waited patiently as the tech explained what she saw. Honestly, I don’t even remember the diagnosis of a cystic hygroma. I just remember them telling me something was seriously wrong and that I needed to do the 1^st trimester screening in two weeks. That whole appointment is so etched in my brain, but yet so foggy. I took my ultrasound picture, got my husband a soda, and tried my best to hold it all together as I met my husband. Needless to say, this was one of the hardest days of our 9 years of marriage. When you are pregnant, you never expect that you will be that minority of parents who get life changing news, yet here we were. We were shocked and so emotionally drained.

2. PAIN & GUILT-
The following day I received my Baby Beats heartbeat monitor that I had ordered the week before. Receiving that monitor was like a knife in my heart. Instead of listening to my baby grow, I felt like I would be listening to see if my baby had stopped growing. The following two weeks were just so hard. I found forums that had a positive vibe, but there were still so many unknowns that nothing really helped to ease the pain. I felt like I was being punished for wanting to peak at my baby via the ultrasound. I know it is not rational, but I thought that if I would have waited until the 20 week ultrasound, there would not have been bad news and my baby would have been perfect. I know that sounds silly.

3. ANGER & BARGAINING-
To say I was not angry would be a lie. I had suffered a miscarriage before the birth of my first daughter, so I understood the grief that is felt after losing a pregnancy. I was so angry that I had such a high probability of going through something similar, but also so much harder and difficult to bear. I had been told that I had a 90% chance of having a miscarriage before 24 weeks. The “why me” was running through my head daily.

4. "DEPRESSION", REFLECTION, LONELINESS-
Looking back I would say I was depressed. I had a hard time being around other pregnant friends. My friends had very close due dates and one was actually due on the same day as me. I constantly wondered how November would look. I thought about how seeing friends’ babies would be a reminder of us not having our baby. I tried my best to not let these feelings be known. I would make things seem better than what they were. Who wants to be around a depressed person? I became an expert at hiding my emotions and sugar coating feelings.

5. THE UPWARD TURN-
At 19 weeks I was scheduled to have an amnio. Before the amnio, the perinatologist did a scan of our daughter’s neck and discovered that the cystic hygroma had resolved. We were overjoyed and decided to decline the amnio. At 24 weeks her heart echo came back great with no seen heart abnormalities. On the way home from the appointment, I stopped and purchased my little fighter her very first outfit. Yes, I have another little girl and plenty of clothes, but this outfit represented the hope and faith I had about making it to November and delivering a healthy baby girl. I finally felt hopeful.

6. RECONSTRUCTION & WORKING THROUGH-
I wish I could say that my mind never went to the “what-if’s”, but it did. I tried to prepare the best I could, but I don’t think one can really prepare for something you have no clue how to handle.

7. ACCEPTANCE & HOPE-
November 11^th, 2010 came and so did a beautiful baby girl. Soon after birth she was diagnosed with Turner Syndrome. She had the classic puffy hands and feet, along with upturned toe nails and tiny, narrow fingernails. When the head NICU doctor walked in to give us the news, my heart broke all over again. I didn’t know much about TS at the moment, but I did know that my daughter would not be able to conceive children of her own. Realizing she would be infertile was just a hard pill to swallow. After a night of searching, I became more educated on TS. I knew we had a long road to travel, but I was thankful to God for allowing us to be her parents. At that moment I decided to be hopeful. How can you not be hopeful when you realize that your daughter is the 2% that make it to term.

Although I am so hopeful, there have been moments where the grief seeps back in and I ask “why Caroline?” Letting the grief come back does not help, but I think it is a normal part of the process. During these past 15 months, I have found a wonderful support group with ladies who have daughters with TS. Finding a support group has been crucial to helping me accept some of the TS issues Caroline has and finding hope by listening to the moms of older TS girls. It is an amazing feeling to find a place where people just understand what you are going through and offer support and comfort.

Traveling through the grief process was hard, but I am so thankful to God for showing us something that has kept my daughter healthy. If I would have had just the standard 20 week ultrasound, my daughter’s cystic hygroma would not have been discovered. Since there is not enough awareness on TS, I wonder if anyone would have caught her TS at birth? Thankfully I don’t have to wonder. Although difficult, I am happy for the grief because it led to an early Turner Syndrome diagnosis. Early diagnosis is key for girls with TS.

I found “Welcome to Holland" while I was pregnant with Caroline. The essay was written in 1987 by Emily Perl Kingsley, about having a child with a disability. The piece is given by many organizations to new parents of children with special-needs. WELCOME TO HOLLAND

“I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......”

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Menu Monday - 2/20/12

noreply@blogger.com (Sarah - Fat Little Legs) — Mon, 20 Feb 2012 13:30:00 +0000

Happy Menu Monday!

Yesterday was spent at an NHL hockey game (MN Wild vs. the Boston Bruins) with my husband and "L". Lily, stayed with my niece for the afternoon. It was nice for the 3 of us to spend some time together, and probably a good little break for "L". We were in a private box. There was food. It was good tasting food - it was NOT good for you food. I ate potato chips with homemade dips, nachos with chili/cheese, a small little beef brisket sandwich, and a few bites of red potato salad. Oh yeah, and I might have had some wine too. I should NOT have eaten that many chips. I'm likely in for a gain this week given those stupid chips, but they tasted so dang good at the time.

Live and move on... this is not a journey of perfection. It is a journey of real life. I live in a real world where hockey games with food happen. So the rest of the week I need to make about more veggies, fruits, and lean proteins. Things that Weight Watchers calls, "Power Foods".

This menu is made on Friday nights, and I actually grocery shop on Saturday mornings, so I'm a little off with a few of these... mostly the baked buffalo chicken pasta, but I will work with what I have. The Sante Fe Wraps are made with black bean burgers and lots of veggies, and I will skip the chips, and the sesame stir fry is a perfect Power Foods meal. I will work with what I have, and modify where I can this week to undo as much damage before weigh in on Thursday that I can.

I made my choice today... now I live with it.

Pioneer Woman's Meatloaf, Steamed Broccoli, Potato Pancakes, Ann's Fruity Fluff Pie
Naan Bread Pizzas
Baked Buffalo Chicken Pasta
Chicken Baseballs, Sweet Potatoes
Sante Fe Vegetarian Wraps, Chips/Homemade Salsa - Recipe Below
Sesame Shrimp Stir fry with rice

Sante Fe Vegetarian Wraps
6 Points+ each (if you use 3 point tortillas)

4 Flour Tortillas - my tortillas are 3 Points+ each
4 Morningstar Farms Black Bean Burgers - 1 package
2 tsps olive oil
1 sliced green pepper
1 sliced red pepper
1/2 sliced red onion
Guacamole, Salsa, and Sour Cream as desired - add the points, for whatever you add

Saute Peppers and Onions in olive oil, over medium high heat. Top each tortilla with a heated burger - cut in half, the peppers/onions mixture, and guacamole, salsa, and sour cream as desired.

This is a delicious meal that you can throw together in 10-15 minutes, depending on how fast you can chop.

What's on your menu this week?
How do you recover from a "diet" mistake?

A Sunday Butterfly Quote

noreply@blogger.com (Sarah - Fat Little Legs) — Sun, 19 Feb 2012 15:30:00 +0000

Broken Hearts

noreply@blogger.com (Sarah - Fat Little Legs) — Sat, 18 Feb 2012 21:23:00 +0000

Turner Syndrome Awareness Fact: About 30% of girls with TS are born with a heart defect.

In addition to February being Turner Syndrome Awareness month, the month we often think of most associated with hearts, also contains congenital heart defects (CHD) awareness week - which was February 7-14.

CHDs are the #1 birth defect, affecting about 1% of all newborns. Over 40,000 babies are born with heart defects in the United States every year, according to the March of Dimes. Babies born with heart defects sometimes need to have surgery and sometimes the condition is just followed closely by a cardiologist.

The most common heart defects in Turner Syndrome are "a bicuspid aortic valve (the valve through which blood exits the heart into the aorta normally has three flaps, but in this case has only two) and coarctation (narrowing) of the aorta (the main artery leaving the heart). " Source

Even women and girls with Turner Syndrome born without a CHD, and who have no history of heart problems or hypertension, are at an increased risk for another heart issue, aortic root dilatation, an enlargement of the aorta. This can cause the aorta to separate or burst - known as aortic dissection.

Given the risk of aortic dissection, all women with TS should be alert for severe chest pain, as this is the main symptom. Even if the pain is shorted-lived it is recommended that they always go immediately to the ER and have an MRI done to rule out this condition.

Women with TS should follow Ritter Rules. According to the Thoracic Aortic Disease Coalition (TAD): "Ritter Rules are life-saving reminders to recognize, treat and prevent thoracic aortic dissection, a deadly tear in the large artery that carries blood away from the heart. Named for actor John Ritter, who died of a thoracic aortic dissection, Ritter Rules combine knowledge with action. Know the urgency, symptoms, who is most at risk and which imaging tests are required to diagnose this medical emergency."

To read the full Ritter rules visit the TAD

The Turner Syndrome Society recommends that, "All girls and women with TS, regardless of age, should have a thorough physical exam and an echocardiogram or MRI of the heart to look for heart conditions as soon as they are diagnosed with TS, during early adolescence (12-15 years old), and every three to five years during adulthood."

We are blessed that Lily does not have a CHD, but this does not mean we are out of the woods.
Yes, this sometimes feels scary to me, but knowing of the risks, following preventative care guidelines, and being aware of the signs/symptoms gives us knowledge going forward, and knowledge is power!

A Gluten Free Future?

noreply@blogger.com (Sarah - Fat Little Legs) — Fri, 17 Feb 2012 13:30:00 +0000

Turner Syndrome Awareness Fact: Girls and women with Turner syndrome are at higher risk for developing celiac disease.

According the Turner Syndrome Society: "When people with celiac disease eat foods containing gluten, their immune system responds by attacking and damaging the villi. Villi, the fingerlike protrusions found on the small intestine, are needed for the body to absorb important nutrients." Source

Last Saturday we tried something different with Lily. We fed her some rice cereal. We are really hoping this will provide just enough extra calories to bulk her up a little - help her gain a little weight.

I, of course, had high hopes going into feeding number one - she would eat right away and love it. After 4 very small spoonfuls, which apparently she was hiding in her cheeks, a big blob of rice cereal came out of her mouth, sort of like lava flowing out of a volcano. She immediately gave me a nasty look, and started fussing. Feeding #1 of cereal was over.
Lily 1, Cereal 0

On Sunday, I knew we had to try again. So late morning, I made up a few teaspoons of cereal. We did have better luck. She actually swallowed a few bites before she got mad and started pushing me away. A few minutes after I took off her bib, I noticed cereal all over the front of her onesie. Apparently she was still sneakily saving it up to spit out later.

Lily 2, Cereal 0

On Monday we informed Lily's daycare that she would like to try rice cereal there. We did not inform them, however, that she seemed to be storing what was fed to her in her cheek to come out later, at random intervals. Evil, or conveniently forgetful? I'm not really sure. I just wanted to see how they would fare.

When I picked her up her daily sheet read: 2 Tbsp of cereal - ate "some". Of course the definition of "some" is pretty squishy, but I was at least happy to hear that she was interested.

Lily 2.5 Cereal .5

Tuesday the sheet read: 2 Tbsp of cereal - ate half.
Lily 3, Cereal 1

Wednesday it read: 2 Tbsp of cereal - ALL - Note (and I paraphrase here): "Lily did not like how long it was taking me to feed her the cereal so she starting licking what had spilled off her bib."

Woo hoo - SCORE!

That's my girl! It is no secret this mama likes to eat - hence the 115 pound previous weight loss. So, I was very proud!

Lily has made some awesome progress this week with eating, and I couldn't be happier. I have, at the same time, noticed she hasn't been sleeping as well the last few nights, and yesterday I changed 4 poopy diapers between 5 pm and 10 pm! She also has horrible diaper rash.

And I went there...I immediately went to thinking that she may already be experiencing a gluten reaction (and yes most baby "rice" cereals actually do contain wheat). Never mind that it could be something "normal" for a 5 month old. Maybe her stomach is simply adjusting to a new food, or maybe she's started teething, and is experiencing the many poops and diaper rash of teething, just like her brother did.
Its so hard to know. Its hard to know if what my sweet girl is experiencing is a normal baby development thing, or if its the sign of something more serious. And I know that for the future, my mind will probably always go "there"; always go to the worst case scenario. After my pregnancy and Lily's diagnosis, it seems to be how I've been reprogrammed.
I've already thought about the "what ifs" of celiac disease. She won't be able to eat cake at a birthday party, and snacks at daycare will be impossible. She won't be able to have pizza with her friends, without at least planning ahead. It makes me worried, but even more so, it makes me sad. How much should I as a mother worry, and how much should I just chalk up to normal development? And how can I possibly know?

I don't know. I don't think anyone does with any child they raise. And well, raising a child with some special needs, makes knowing even cloudier. While, I don't know what the future will be in this regard for Lily, I do know that one of my dearest friends has Celiac Disease. I know it hasn't been an easy journey for her, but I fed her dinner a couple of weeks ago at my house, and I do know that she had steak, a baked potato, and salad... just like all of us did. She is coping... and if we have to we will too. Its just another punch on our card of symptoms that could show up at any time.
Every new symptom, every new sign, I over analyze. Week after week I make myself just a little bit crazy waiting for the next shoe to drop.

I desperately want for Lily to be one of the girls that only experiences mild Turner Syndrome symptoms, given some of what she has already been through in her short 5 months, but as soon as that thought crosses my head, I remember how incredibly lucky we are. She doesn't have a heart defect and she doesn't have a kidney abnormality, like so many of her amazing Turner Syndrome sisters, and I know instantly that I would trade having to live gluten-free for a perfect heart and kidneys any day!

Xs and Os

noreply@blogger.com (Sarah - Fat Little Legs) — Thu, 16 Feb 2012 13:30:00 +0000

I know its a couple of days late...

But, Happy Valentine's day from me and my sweetheart!

We love Valentine's day because of all the XOs! XO is Lily's official chromosomal karotype.

A Butterfly or a Grizzly Bear?

noreply@blogger.com (Sarah - Fat Little Legs) — Wed, 15 Feb 2012 13:30:00 +0000

I have the pleasure of sharing another guest post with you today from Kirsten, whose daughter Sienna is featured in my beautiful butterflies post, and who shared with us last week her struggle with the infertility aspect of Turner Syndrome. I am so thankful for Kirsten sharing her feelings with us, and giving me a little break from writing for a few days.

A Butterfly or a Grizzly Bear?

It is February 2012, Turner Syndrome Awareness month - the shortest month of the year to celebrate our short little princesses.　Doctors told us Sienna would be 4’6” to 4’8” without growth hormones and closer to 4’11 or maybe 5’ with them.　I want her as tall as possible. Maybe I am more of a realist or people may say down to earth, but I LOVE the TSSUS slogan of “Short Happens!" Short stature is a common diagnosis and the most common trait of TS for most girls or women. And since TS has no real cause – it is nothing either parent did or contributed to – it just happens. I like to think sometimes our eggs and sperm follow the recipe and sometimes they get it wrong. So short really does just happen.

And the TSSUS symbol for TS is a butterfly. As Sarah writes in her blog:

“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!”

I like the butterfly and I do get this meaning. It is positive and supportive. It is hopeful.

I would be lying though if I also said I liked it all the time. When I really think about this in my life, as it pertains to my butterfly, I think I get defensive. And this is weird – because I am usually the person who gets all this stuff and is OK with it or does not think about it. But those times it usually does not pertain to me or I get the joke. And here is why I can say it bugs me. And it could bug other moms who are like me.

Up until around May or June 2011 I was raising a perfectly normal and healthy child. She was healthy and active and learning and smart and full of life, love and attitude. The attitude part really makes Grandma happy for some reason…but we will not talk about that here. She was much shorter than her peers but every bit as smart, normal, active and happy as everyone else. Then we did a blood test and found out she has Mosaic Turner Syndrome. Some percent of her cells only contain one X chromosome, and some contain two X chromosomes but one is apparently broken. Of all the things that can go wrong or are more likely found in a TS girl – she has relatively few. She has no heart defects, and no outwardly physical symptoms one would recognize as TS. She does have a horseshoe kidney, she does wear glasses, and she has tubes in her ears (2x times now) because of recurring infections and fluid in her ears that impacts her hearing if left unchecked. That is pretty much the entire list.

Now I have a daughter with TS. OK. Nothing has really changed for me except we now give her a growth hormone shot every day and we have to have a few more doctors appointments every year. She is still the same girl and still so full of life. I feel sometimes this verbiage around this butterfly symbol is saying there is something defective or substandard about our girls. I have heard other mothers say they know their daughter will endure the laughter from other children and people as if they are assuming their TS butterfly is already imperfect. To me, there is a sense of faultiness implied here mixed within the support and hope.

Maybe it’s how I trust doctors and go to them to fix the things that needed fixing, and have from a young age. Maybe it’s the 15 surgeries I have had in the last 14 years and still consider myself　healthy. Maybe it’s the fact nothing a doctor could do to me anymore scares or worries me in the least. Maybe it’s is my overall personality about this stuff. It is just a procedure and I know why it’s needed and I do not get overly emotional seeing my baby scared or poked. Sure, you might be thinking it, but I am not heartless. I do not like to see her scared and unsure, but I stay calm and we handle it. And I think I am passing this attitude to my child. She was not thrilled about shots as a baby / toddler getting her vaccinations. She is unsure of new doctor appointments and procedures. She was not particularly thrilled the night the nurse came over to teach us how to administer the GH shots and had to get the first one. She is 5. I get it. But after the first shot - it really has been painless. Her dad and I treat this as putting on your jammies or brushing your teeth, and we do not waver in this. If anything, we use humor to make it just another thing.

Maybe it’s my defiant attitude – and most people I know would verify this for you - adamantly. I am a fighter, persistent, and most of the time “you can’t” or “no” is just a dare to me. TS is not who she is or what she is. It is something she has. And will always have, but in my mind it does not stop her from doing anything, ever. It does not limit her in any way – except maybe reaching the top shelf without a step stool. I do not feel I am in denial in any way as well, as I do not neglect any appointment, recommendation or treatment. I keep an open mind to things that could go wrong and I watch for them. I pay attention to her moods, her feelings, and her behaviors. I am very observant and mindful of what is “wrong” with her and the things that could still appear.

But some days I feel I am raising a grizzly bear, not a butterfly. There is nothing neither delicate nor fragile about her. She is decisive, active, and curious. She is a tough little cookie. She has no problem standing up to me, even when I remind her who the mom is and that we do not talk to each other that way. She has no problem getting what she wants or letting others know she is there. There is nothing in my mind about hoping she will fly on her own – she would do just fine if she moved out today! She is resourceful, smart, adamant, and independent. She is the same little girl I had before May 2011.

Please don’t get me wrong. I know TS girls come in all varieties and all with unique and different conditions or symptoms. I would never discredit or make light of the struggles others go through and what they had to deal with. Some TS girls can have very serious issues and this is devastating to a family. At the very least, it is hard on any family. There are things which go wrong that do cause tough emotions to surface and difficulties for the girls. We all have different lives, thoughts, abilities and concerns. For me, the days it pops into my head that only 1-2% of babies conceived with TS actually make it to a live birth and if there are not 15 other things on my mind when, it can stop me in my tracks. My little grizzly bear is a miracle. She is here despite the odds.

I also know I am lucky and she is lucky. I can see the other difficult issues many parents, especially the ones who knew before their daughter was born, had to endure. These people are strong. They are survivors. So are their butterflies. I am not bragging nor refuting the TS world with this post. I am saying for me, there is nothing fragile or need for more hope in my life. There is no doubt in my mind my little girl will grow up just fine. I feel this makes us stronger and better able to deal with all the things that are going to happen in our lives that are not good. This is something that makes her unique, and will help her see the differences in others. This is one more step on the journey we call life. Whether she is a grizzly bear or just a cute little butterfly, she is still my daughter, the love of my life, and she will grow up as a good person if I have anything to do with it. Now, we just have another purpose, to share with and help the rest of the world see TS as normal, acceptable, and not the end of the world.　

Single Serving Vanilla Cheesecake

noreply@blogger.com (Sarah - Fat Little Legs) — Tue, 14 Feb 2012 13:00:00 +0000

I don't know about you, but I certainly can't have a full cheesecake in my house... kudos to you if you can! So, I came up with this single serving recipe instead. It takes all of 5 minutes to throw together (not including baking time). My husband has graciously taste tested it, and declared it delicious!
Make it for your sweetie tonight, and Happy Valentine's Day!

Single Serving Vanilla CheesecakeServes 6
6 Weight Watchers Points Plus

12 Nilla wafers - crushed
1 Tbsp butter, melted
1-8 oz package cream cheese (do NOT use light or fat free)
1/4 cup sugar
1 egg
1 tsp vanilla extract

Preheat oven to 325.
Line a 6 cup muffin pan with cupcake liners.
Mix together the Nilla wafer crumbs and melted butter, spread evenly in the bottom of each cup, and press lightly with your fingers.

In a mixing bowl combine cream cheese, sugar, and vanilla. Beat on high with a mixer until well blended (about 1 minute). Add in the egg and beat another 20-30 seconds. Divide evenly among the muffin cups.

Bake at 325 degrees for 25-30 minutes. Remove from oven, and cool at least 4 hours.

Serve topped with a little pie filling, fruit topping, caramel or chocolate drizzle.

Note: After removing from the oven the cheesecakes will sink a little in the middle. This makes a very intent to fill with the topping of your choice. We topped ours with organic, cherry preserves.

Menu Monday 2/13

noreply@blogger.com (Sarah - Fat Little Legs) — Mon, 13 Feb 2012 13:00:00 +0000

Happy Valentine's week!

I know a lot of people hate Valentine's Day. Personally I'm neutral about it. I think its stupid that men are expected to pay 3-4 times as much for roses on this day. That isn't to say I wouldn't LOVE to get flowers (in case my husband is reading this), its just I would never expect someone to waste money like that, and I'm not really a roses kind of girl.

Instead of buying my husband something he will likely never use, I almost always make him a nice dinner, and he loves pasta! So... pasta it is. I'm using the Pioneer Woman's Cajun Chicken Pasta, but I lightened it up by using less pasta, less oil, less butter, and fat free half and half in the place of heavy cream. We think its delicious!

I also wanted to make him a cheesecake, but I didn't want to have a whole cheesecake in my house because, well... honestly I'm weak! So... I'm doing a little experiment with a Vanilla Mousse Cheesecake recipe in single serving sizes. If it works out, I'll post the recipe later in the week.

Sirloin Steak with Whisky Cream Sauce, Baked Potatoes, Steamed Broccoli
Jack Daniels Chicken (purchased already made from Costco) and Alexia Sweet Potato Fries
Pioneer Woman's Cajun Chicken Pasta Lightened (recipe below), Caesar Salad, Vanilla Mousse Cheesecake - single servings
Spaghetti Pie... yes I promise we will finally eat this... it has been on my menu for 2 weeks!
Cod (from Costco) used to make "fish and chips", roasted butternut squash

Pioneer Woman's Cajun Chicken Pasta Lightened
Serves 5 @ 8 Points+ each

Fair Warning: This recipe is spicy
2 whole Boneless, Skinless Chicken Breasts (about 1/2 a lb), Cut Into Cubes
3 teaspoons Cajun Spice Mix
8 oz uncooked Fettuccine
1 Tablespoon Olive Oil
1 Tablespoon Butter
1 Green Bell Pepper, Seeded And Sliced
1 Red Bell Pepper, Seeded And Sliced
1/2 Large Red Onion, Sliced
3 cloves Garlic, Minced
4 whole Roma Tomatoes, Diced
1 cup Fat Free Chicken Broth
1/3 cup White Wine
1/2 cup fat free half and half
Cayenne Pepper To Taste
Freshly Ground Black Pepper, To Taste
Salt To Taste
Chopped Fresh Parsley, To Taste

Cook pasta and drain.

Sprinkle 1 1/2 teaspoons Cajun spice over chicken pieces. Toss to coat.
Heat 1/2 Tbsp oil and 1/2 Tbsp butter in a skillet over high heat. Add the chicken in a single layer, and allow chicken to brown on one side, about 2-3 minutes(depends on how big you cut up your chicken). Flip to the other side and cook an additional minute. Remove with a slotted spoon and place on a clean plate.

Add remaining olive oil and butter, and add the peppers, onions, and garlic. Sprinkle on remaining Cajun spice, and add salt. Cook over high heat for 1 minute, stirring and trying to get the vegetables as dark as possible. Add tomatoes and cook for an additional 30 seconds. Remove all vegetables from the pan.

With the pan over high heat, pour in the wine and chicken broth. Cook on high for 3 to 5 minutes, scraping the bottom of the pan to deglaze. Reduce heat to medium-low and pour in half and half, stirring/whisking constantly. Cook sauce over medium-low heat for a few minutes, until it starts to thicken. Add the rest of the spices to taste

Finally, add chicken and vegetables to sauce, Stir and cook for 1 to 2 minutes, until mixture is bubbly. Add drained fettuccine and toss to combine.

Top with fresh parsley if you want.

A Proverb

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

The Turner Syndrome symbol is the butterfly.

Here is the history of the symbol, according to the Turner Syndrome Society (TSSUS):
"The four circles from our previous logo have evolved into the wings of the butterfly. This evolution connects our past to our present. The butterfly is feminine yet strong like our members. Every butterfly is unique just like our members. Butterflies fly on their own which is what we hope all of our members will do with the help of TSSUS!"

I found this quote on Pinterest

Reverse Weight Watchers - An Update

noreply@blogger.com (Sarah - Fat Little Legs) — Sat, 11 Feb 2012 14:30:00 +0000

Maybe you'll remember back to Reverse Weight Watchers. That would be where I was trying desperately to get Ms Lily to gain weight - and at the same time wanting myself to lose weight.

Well... we are nearly 4 months down the road, and as desperately as I've tried, my Lily gains weight slowly. She weighed in at a whopping 10 lbs, 2 oz at her 4 month appointment last month. She was in the 0 percentile for weight and the 1st for height. Yes, I know that a fact of Turner Syndrome is that she will be smaller. But I didn't expect it to show up so soon and so severly. I often wonder how I got children that are in such low percentiles, when I'm in the 200th percentile for weight - or at least that's how it feels.

Fast forward to early this week. I weighed Lily... and.... drumroll please!
10 lbs even!
Really?
You have to be kidding me? In 3 weeks, my daughter has managed to ~~gain~~ oops I mean lose 2 oz?
Really?
OK, she was sick for a week. That must be it.
Who am I kidding? She is never going to be the huge, roly poly baby I always imagined myself with.
She is going to be her... uniquely her, and if I've learned anything in the past year, it is that Lily does things Lily's way.

Meanwhile, we see this repeat for the last several weeks at Weight Watchers:
Down 1 lb
Gain .2
Down .8 of a lb
Down 1 lb
Sigh... yes, my weight is also decreasing... slowly, but surely. I am down a total of 8 lbs in 2 months. Those 2 months include the holidays. I'm not making excuses. I am in all honesty doing exactly what I should be doing: counting my points. Its just painstakingly SLOW! My average weight loss is under a pound a week. I can't say I'm thrilled. Can you tell? I'm not sure when my body is going to wake up and realize that I'm no longer pregnant, and it can let go of the weight - hopefully before summer though, since I really, really don't want to buy a new summer wardrobe. I already had to buy a new winter wardrobe. I really miss those pants and tops I put in a bin down the basement.

Lily is destined to gain slowly... I am destined to lose slowly. I just have to take a few deep breaths and remind myself that in a couple of years none of this will matter - for either of us!

Like Mother, Like Daughter

noreply@blogger.com (Sarah - Fat Little Legs) — Fri, 10 Feb 2012 13:42:00 +0000

You might remember - or not if you're new - back in April of 2011, when this article appear in the Minneapolis Star Tribune:

Blogging it off: Lose weight, with help

It was the first time I've ever been published!

And now, with the help of another local new source, I've been published... again, or rather I should say Ms. Lily has been published. Like Mother, Like Daughter!

Yesterday the Eagan Patch ran part 1 in a two-part series:
How Eagan's Lily Reitsma Beat the Odds
And today was Part 2.

I am so honored that their editor chose to do a story about Turner Syndrome and to help spread Turner Syndrome awareness! Thank you!

Also... starting today, I'll be blogging regularly for the Patch. Yes... I was feeling bored, you know with a 4 year old, 4 month old, and full time job, so I decided I needed something else to do! I'll mostly be sharing content from here, but stayed tuned because you never know what might end up over there, that isn't posted here!

Now, if the line will form orderly to the left... we'll get started with the autograph signing...

A Place to Belong

noreply@blogger.com (Sarah - Fat Little Legs) — Thu, 09 Feb 2012 13:00:00 +0000

When I was 19 weeks pregnant and I found out that something was not quite right with our baby, I felt alone. All around me were happy people, experiencing normal pregnancies. I felt like I was the only person in the world that was going through what I was going through.

Alone. Terrified. No hope for the future. I struggled just to exist for several weeks.

I wrote this.

The emails started coming in. They were filled with stories of other people with babies that were diagnosed in utero with a cystic hygroma. I met Deanna. She made me feel it was going to be OK, regardless of whatever condition was causing Lily’s hygroma. I started hearing from other people: people that had lost their babies, people whose babies survived the cystic hygroma, but were now coping with their ultimate diagnosis. And while we wouldn’t find out until Lily’s birth that the reason for her hygroma was Turner Syndrome, it didn’t seem to matter. I suddenly wasn’t so alone.

Our baby, Lily, made it. She was born… alive! I felt so relieved. She made it from my womb into my arms safely. We were finally told that the growth on her head was not connected to her brain, and 4 days after her birth they sent us all home… together! For weeks my brain couldn’t process any more than feed baby, sleep, feed baby, change baby, sleep, over and over again.

About six weeks after Lily’s birth, I finally started to process her diagnosis, Turner Syndrome. I started to process what this would mean – for her life, for our family, for our future. I’ll be honest, I started to freak out a little. When Lily was still in my womb I was so focused on her making it, that I never started to think about what it would be like if she really did. Suddenly, I was faced with a new reality. Again, I felt alone. Sure, I had those stories of other babies that survived a cystic hygroma, but none that I can remember actually ended up having Turner Syndrome.

In the past, even with my weight loss journey, I found that online support groups, either through email or now through facebook or other social media outlets, have been a huge source of support for me. And so, desperate to not be alone, desperate to feel normal, I started my search. I needed a place to belong. I found a yahoo group for Turner Syndrome parents at first, and then I found a Turner Syndrome group on facebook. I posted Lily’s story, I posted about our struggles, I posted about weight gain issues and reflux. It was only a matter of minutes until the responses started pouring in. These people understood. I knew I had found "my people."

No matter what you’re facing - maybe it’s a the birth of a child, a divorce, the death of a loved one, a weight loss journey, or a health issue – I encourage you to search for an online support group, to lift you up when you are down, and provide advice when you need it.

I’ve learned more from my Turner Syndrome online support groups in the past month than I ever could have imagined I would. I’ve developed friendships with people I’ve never physically met. These people are an amazing community, an extended family. They get it. We walk the same road, but we walk together – never alone. And Lily and I, we’ve finally found a place to belong!

It's True!

noreply@blogger.com (Sarah - Fat Little Legs) — Wed, 08 Feb 2012 13:53:00 +0000

Turner Syndrome Fact #3: Girls with Turner Syndrome are super cute!

OK, OK, maybe that really wasn't a fact, but it is true!

To Be or Not to Be a Mommy?

noreply@blogger.com (Sarah - Fat Little Legs) — Tue, 07 Feb 2012 13:00:00 +0000

Today, I have the privilege of sharing with you a guest post! This was written by Kirsten, she is the mother to a beautiful TS butterfly, Sienna Rain (who was featured in this post).

TS Fact #2: One of the common features of Turner Syndrome is incomplete sexual development and ovarian failure and infertility.

To be or not to be a mommy?

I admit I struggled with this question for a long time throughout my life. When I was five, I loved playing with my “babies” and practicing being a mom. I would feed them, dress them and love them like they were real. I grew up, went to college and got a job. The thought of having my own real babies at the time did not seem appealing. I enjoyed life and still had a lot to do. Being a mommy did not seem like a high priority on my list.

I did, however, give myself a deadline. My plan was to become pregnant by 34 – if I was going to do it at all. It seemed like a reasonable age to become a mommy, and if I lived to 34 – since I had no real plans formulated after Y2K, since the general consensus was the world might end – seemed like a goal I did not have to think about. I would be 30 years old in 2000 and if I was going to die young and cool – it would be before that – the problem removed from my life, for the time being.

Despite the hype, we all lived through Y2K. I turned 30 years-old and was not as young and cool as I once thought of myself. I had divorced my first husband and was living with my dog and two cats. Still the questions of being a mommy haunted me. Not to where it consumed my thoughts in life, however it always seemed lingering in my brain wanting an answer I could not give.

I married a second time in 2003 and was enjoying life again. The same year, a doctor informed me about a health issue called endometriosis I was unfortunate enough to have. This painful condition can cause severe fertility issues, and I had four surgeries in two years to help control it. I did not have the intense pain everyone talked about with the common side-effects–in my mind if the pain was not there, how could the fertility issues be there?  I was wrong. And the dang mommy clock kept ticking in the back of my mind.

In Oct 2005, I had a myomectomy, which is a large tumor removed from my uterus growing into the walls and muscle tissues. The doctors told me I should not even attempt to get pregnant for at least 3 months and when I did, I would have to have a C-section due to the possibility of tearing the uterus during labor. The C-section I was happy about – I always thought getting and having the baby were more important than how it came into this world. Something happened in November of 2005 – maybe it was a full moon or something – the clock won. I decided to have a baby. I admit I felt the weight of the decision gone in an instant and I was OK with my new goal: 35 – 1 year later than my original goal - however better late than never, right?

I quit taking birth control pills in Nov – 1 month after the myomectomy surgery. Always a rebel at heart, I guess. And I was pregnant by Jan 2006. After a 24 hour panic attack in my head: “who was going to pay for this thing and was this a good decision?” I embraced my new growing baby bump. I made a decision to be a happy pregnant woman no matter what for the next 10 months and start planning the parent I wanted to be. I prayed I would have a cute little girl – I only wanted a girl – and she would be more like her dad than me. I was not the cute skinny cheerleader girl in school and was always jealous of those girls, besides, her dad is a nice average build – no significant fat and　stable metabolism. I wanted her to be cute and little to give her the opportunity to enjoy all those things I felt I missed myself. She would be strong and independent and smart like her mommy. Oh yeah - and humble! ;-)

My little princess came into this world on Sept 11, 2006. She was early and impatient like her mother and perfect in every little tiny way. She was 5 pounds 4 ounces of cute. We named her Sienna Rain. I am around 5’5” on a good day and her dad is 5’7” – you can guess we are not professional basketball players. My little peanut was just that. She was small to begin with and stayed there. 　She always grew on a steady curve – only the curve was always on the one percentile or lower of the growth chart. 　

I never went back on BC pills. I wanted two babies to make my ideal family perfect. I tried and tried over the next four years and ended up having more surgeries and different check-ups to make sure the tubes were not blocked. There was more money spent at fertility clinics than I care to admit.   Lots of visits and procedures involving drugs I couldn't begin to pronounce, let alone spell. Every attempt failed. No second baby ever came into this world for us. This made me a bit sad. My life was not over with only one child, and in reality my check book was heavier with only one child to spoil, however I felt a little sad not being able to give Sienna a sibling.

Over the next 4 years, Sienna's doctors expressed concern about Sienna’s height and weight – however their fears always subsided when each milestone became met as expected. Sienna is a fast learner, her speech was fine and we were also using the American Sign Language at home - all proper development according to her doctors. They could see nothing else wrong with her other than her height– they watched and waited. I had another deadline, also: if by the time she turned 5 and was not catching up to her peers in height, I would have her tested for something. No one ever said Turner Syndrome to me, however in the summer of 2011 she had a blood test and the result was Turner Syndrome (TS). The TS result explains the cute and short little girl I wanted in the beginning. My prayers were answered in a round about way!

TS girls come in all flavors with a wide variety of possible issues. Short stature is 99% universal among girls with TS. Fertility issues are the next highest side-effect. After that, heart and kidney issues can arise, and scoliosis is common also. There are even some learning issues tied with TS in some cases. TS girls can have only one X chromosomes in all or a portion of their cells. And many times if they have two X chromosomes, the second broken one is the cause of the different varieties of responses and conditions of the syndrome.

Today is 2012 and I have a 5-year-old girl with TS. We started the prescribed growth hormone shots in Dec 2011. She is a trooper. The shots are a non-issue at our house, despite the horror stories out there and the anxiety this can cause to little ones. The TS does not define us – it is something we have. Sienna is a healthy little feisty girl who tires out her mommy every day. I had a hysterectomy in December of 2011 and found out how horrible my mommy parts had become. The endometriosis did a number on my system, while those fertility issues I did not think I had, turns out I had more than anyone else expected. There was a rare chance for me to have a baby, at all, and somehow Sienna made it here. She is my miracle.

She is also me circa 1975. She is the 5-year-old me now playing with dolls, being the mommy.　 She sees her friends from daycare and school having little brothers and sisters. She wants one. This breaks my heart all the time. It broke my heart before the hysterectomy and the TS diagnosis　because I could not get pregnant again. Today, it now breaks twice every time she brings it up because she knows her mommy’s baby parts are gone. She tells me says she will have a baby in her tummy and it will be her little brother or sister. Any older than 5, this would be a creepy story, ending in millions of dollars of therapy; however I understand her 5-year-old thought process. She is trying and willing to help me get her a baby brother or sister. She is such a sweetheart.

And now I worry about how I tell this sweetheart someday she may run into these problems herself.　 The doctors did see a uterus when they did the kidney ultrasound, and it looked normal for a little girl of 5. However, at this age they cannot tell if her mommy parts will work as intended or even at all - she's still too young. We will wait until puberty and see how it’s going. It’s not unheard of for a TS girl to get her period and breasts as non-TS girls would and to have a baby. The chances are slim though. Maybe it will be early ovarian failure or maybe her parts won’t work at all. At best she will probably need whatever fertility options are out there in the future or she may need to adopt.

Every time she says “when I become a mommy…” I hope and pray she cannot decipher the look of pain on my face. I cannot dash her 5-year-old dreams of being a mommy – it would do neither of us good. She should have those same dreams and times to pretend as every other little girl does. She should practice being a mommy today because we can be mommies in other instances. My 3 dogs and 4 cats can attest to this now.   And she, as I have learned, will need all the practice, dreams, and those ways she pretends in her imagination when she becomes mommy age and starts to deal with all of these adult issues. She will have to decide if she wants the responsibility in the first place and depending on what her body can or cannot do, may have to decide sooner than I wish. To be or not to be a mommy? This question will have a lot more meaning and choices for her, and possibly some heartache I don’t want to think about, and I hope I am still here as her mommy to help her through it when the time comes. 　

Menu Monday 2/6

noreply@blogger.com (Sarah - Fat Little Legs) — Mon, 06 Feb 2012 13:15:00 +0000

Best laid plans... that was really the theme of last week.

Our week took a turn around Wednesday when Lily, who had had a cough since Monday, needed to go to the doctor to get the cough, that was turning particularly nasty, checked out. They swabbed her for RSV - negative, but then turned around and said it was probably RSV anyways, she also had an ear infection. On Thursday and Friday both "L" and her were home from daycare because of a runny eye (Lily), coughs and sporadic low grade fevers. Lily also has her first ear infection, and the Amoxicillin is doing a number on her stomach. Her reflux is back, including projectile vomiting, with a vengeance, and she hasn't been feeding well either. I feel so bad for her. We are now going on a week of the cough, and it just doesn't seem she is recovering very quickly. Friday, I also ended up with the nastiness, manifested for me as a sinus infection. I was so spent by Friday at 10 am, that I asked my dear husband to come home early and rescue me. So... needless to say some of the planned dinners of last week went to the wayside.

Which brings up a good point. If we plan a dinner and something unexpected happens... what do we do. Well...we make due. We either make french toast or pancakes for dinner, eat frozen pizza, make pasta - last week it was pasta with a jarred pesto (we always have pasta and sauces on hand in our pantry), have sandwiches, eat cereal, or get take out. Life happens. We do what we can to recover and cope and move on. And we move extra meals to the next week.

Sometimes I get stressed and eat a piece of chocolate cake. Yep... that happened!

So... this week you might see a couple of meals from last weeks menu as repeats... its because we haven't eaten them yet.

What's for dinner this week

Chicken Paillards with Lemon Butter sauce, boxed risotto, butternut squash
Chicken Fajitas and Homemade Guacamole
Sweet and Sour Meatballs and Rice - Recipe Below
Spaghetti Pie, Salad
Naan Bread Pizzas
Chicken Baseballs, Veggie, and Sweet Potatoes

Sweet and Sour Meatballs
Serves 4: 4 meatballs, and 1/4 of the sauce/veggie mix 8 Points+ each

For the meatballs mix
1 lb extra lean ground beef
1 package Lipton onion soup mix
1 egg
1/2 cup dried bread crumbs (I use panko)

Roll into balls, and cook in a skillet over medium high until browned on all sides.

Sauce:
1/4 cup cider vinegar
Reserved Pineapple Juice (from below)
1/4 cup brown sugar
1 Tbsp soy sauce

Mix all together and pour over meatballs, bring to a simmer and simmer 10-15 minutes. Mix 1 Tbsp cornstarch and 1 Tbsp of water... add to the mixture and stir, cooking about 1 more minute.

Add:
1 green pepper chopped
1 can (20 oz) of pineapple tidbits packed juice, drained, juice reserved

Stir and serve!

Winnie the Pooh Was a Wise Bear

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

Turner Syndrome Fact #1: One of the most common features of Turner Syndrome is short stature.

Winnie the Pooh was a wise bear...

It fits Lily perfectly!
I'm pretty sure given my new found love for this quote, Lily needs this for her room!

Brotherly Love

noreply@blogger.com (Sarah - Fat Little Legs) — Sat, 04 Feb 2012 22:59:00 +0000

My friend Deanna (who by the way a huge thanks goes to for helping me promote Turner Syndrome Awareness month) always posts hilarious pictures of her 2 little ones. Her baby boy, Carter, was born around the same time as Lily and she had an almost 2 year old, "Chubbs" who just happens to sport an extra chromosome. Chubbs had a cystic hygroma prenatally, just like Ms. Lily did. That's how Deanna and I were "introduced". Anyways, together those two equal hilarity.

Whenever I see her pictures I think... oh my children would NEVER act that way. They are much too ~~sweet~~, ~~kind~~, ~~well-behaved, docile~~

Chubbs and Carter, this is for you

Be prepared... I am about to...

Use my magic to extract all your thoughts out of your head... and replace them with a...

... bright pink hat! And I quote: "I didn't knock her over... I was just playing with her, because she likes to be knocked over"

I'm so glad Ms. Lily has her big brother to "help" her as she grows up.

You have Taught Me

noreply@blogger.com (Sarah - Fat Little Legs) — Fri, 03 Feb 2012 18:00:00 +0000

You have Taught Me
by Anne Maclellan March 1998

You have taught me patience
to rejoice in small gains which others take for granted.
You have taught me tolerance
to accept that your perspective is different
and deserves respect.
You have taught me courage
to fight for you when no one else will.
You have taught me endurance
to go on when I feel I can't any more.
You have taught me humility
to accept when I can't make things better
but can only be here for you.
You have taught me to love
at a deeper level than I ever thought possible

"You have taught me patience"
I had to wait for a full 18 weeks to find out your exact diagnosis. This required a level of patience I didn't even think I had.
"to rejoice in small gains which others take for granted."
small gains for us means in your weight and height. You are small, everyone has to comment on it, and not necessarily in the nicest way. They seem to think we are starving you. You sometimes only gain 1-2 oz a week, while other babies are gaining 1/4 to a 1/2 pound. You are tiny, but mighty. You are in the 0 percentile for weight and 1 for height at 4 months. At least you are getting good use out of your clothes! Some people take the growth of a baby for granted... I rejoice at each small ounce bigger you are, at each millimeter longer you get.
"You have taught me tolerance..."
Tolerance... tolerance for the hours and hours of fussy, colicky crying, and the hours I begged for you to eat more than an ounce at a time.
"You have taught me courage to fight for you when no one else will."
I fought for you before you were born. I didn't have an amnio because even though the miscarriage risk is small, it is still real,and I don't play odds well.
I fought the neurosurgeon for an answer after you were born. He didn't seem to care we were waiting for an answer. I was never so glad when we were told we wouldn't be needing his assistance.
I fought for you when you were projectile vomiting twice a day, and no doctor seemed concerned. I knew your little tummy was having issues.
I fight for you daily... to bring you the best medical care available, and the happiest life possible.
"You have taught me endurance to go on when I feel I can't any more."
Some days... maybe more like a lot of days... I feel at the end of my rope. When I have a full load of work, and the garage door doesn't open and the stove is broken, when both you and your brother are sick, and I haven't showered in 3 days... when you cry and cry and cry. I wonder how much longer I can do it. Then I think about how strong you were before you were even born. How you showed amazing endurance then and every day since! You are strong, you make me stronger.
"You have taught me humility to accept when I can't make things better but can only be here for you."
There is so much I cannot change with and for you. I cannot get your missing chromosome back, I can advocate for you, but I can't change the essence of your make up. And even though I initially wanted to, now I accept it. I don't want it back, because then you wouldn't be you. And I love who you are... all of it.
"You have taught me to love at a deeper level than I ever thought possible"
Before I ever met you (except on an ultrasound screen), I loved you. I tried for many weeks, after our devastating ultrasound to detach myself from you even though you were living inside of me. I wanted to stop loving you, because I didn't want to hurt if you died. I tried to ignore your kicks and punches. I wanted to stop loving you, and the more I tried, the more I loved you. I hold you now, I smell your little head, with its gorgeous little swirl of a curl right on top, and I am so grateful you are here, and the past year seems like a distant nightmare!

Lily's Story

noreply@blogger.com (Sarah - Fat Little Legs) — Thu, 02 Feb 2012 17:00:00 +0000

Its day 2 of Turner Syndrome Awareness month, and I'm beyond excited to share that I've received nearly 2000 views of the Turner Syndrome awareness posts from the past 2 days in just the past 24 hours! That doesn't count the 500 email and feed subscribers that have also received the posts! Just think of the people, we've been able to educate. I am humbled and grateful to other bloggers that have helped me spread the word! THANK YOU!

For today, I wanted to bring your attention to this little girl

You remember her, right?

I've added a tab at the top of my page - Lily's Story. This chronicles in order - from pregnancy announcement (before I even knew of Lily's condition) to Lily's birth story - my pregnancy. It contains links to all of my weekly pregnancy update posts, and other posts that were significant for me along last years journey. While that journey has ended - and another type of journey, raising Lily, has begun, I wanted to make sure that anyone visiting here had easy access to it, that it might offer them some peace and hope, or maybe just show them that maybe they are feeling angry and that's OK. Read it and marvel in the miracle of a Turner Syndrome girl that was part of the 1% that made it.

To anyone reading this with Turner Syndrome, I hope you realize what an amazing and wonderful miracle you are too!

I hope when you read Lily's story you will know that God - the God of wonders - is definitely an amazing, loving, and all knowing God.

Our Beautiful Butterflies

noreply@blogger.com (Sarah - Fat Little Legs) — Wed, 01 Feb 2012 13:00:00 +0000

Several weeks ago I had an idea - an idea to share with you what Turner Syndrome looks like. To show you that Turner Syndrome girls are gorgeous and amazing and come in all varieties... just like anyone else.

There is a video that the Turner Syndrome Society created that has the tag line, “I am the same as everyone else yet different than everyone else". I hope by viewing this video and seeing the girls below that you will truely come to believe this.

This project quickly became my passion. I have spent a large amount of my "free time" in the past several weeks, working on this project and learning more about these sweet girls and their mommies! I have been moved to tears many times, and I have been touchly more deeply than I ever thought possible. I learned that Lily and I are not alone, and it has made a huge difference for me. I'm beyond thrilled to share this with you today.

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. Together we can make a difference!

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!

You, of course, know Ms. Lily Grace, my miracle baby and 4 month old girl wonder, but let me now share with you some of the other amazing beautiful butterflies that have Turner Syndrome.

Sienna Rain - 5

Diagnosed with Turner Syndrome at age 4.
Sienna has a horseshoe kidney, short stature, and she is far-sighted - both parents wear glasses though!. She has no other physical symptoms and has a perfectly formed and working heart! Her mom says that her only worry is for her future fertility issues. Like any normal 5 year old playing with dolls does, she wants to be a mommy, and her mother doesn't want to see her heartbroken.

Ivy - 18 months

Diagnosed with Turner Syndrome by a chance amnio, Ivy showed no signs in utero.

Her parents are happy they knew though, as she had a heart defect that came about a day or two after she was born and demanded immediate attention. She came home at 10 days old with a fixed heart! She is now full of spunk, love and snuggles. She's funny and smart. She loves her tutu's, babies and hotwheels. Her mom says that they are "blessed and greatful for our little redheaded princess.."

Mackenzie - 3

Diagnosed at 5 months. Mackenzie is deaf and has some behavioural problems that often come as a factor with Turner Syndrome. Despite all this she is an amazing little girl who has just started nursery school 5 afternoons a week.

Kelsey - 6

Diagnosed July 2011. Kelsey plays ice hockey (go Kelsey!) She loves the color pink, her stuffed puppy "Penny" and swimming in the summer. She also loves to eat pasta!

Check out Kelsey's mom's blog

Sajda - 11 months

Sajda was born with a congenital heart defect - Pulmonary Atresia with VSD. She had open heart surgery at 5 days old. It wasn't until later testing that it was determined she had Turner Syndrome. She has the Mosaic form of Turner's Syndrome. So far she is doing great and is enjoying life with 4 older brothers. Her mother says, "She is our joy, our sunshine."

Check out her Sajda's mom's blog.

Caroline Bella - 14 months

Caroline has Classic Turner Syndrome and was diagnosed at birth due to a cystic hygroma during utero, and her puffy hands and feet at birth. She is a true fighter. She is still getting a grasp on her gross motor skills because she had developmental dysplasia of the hips (DDH) (dislocated hip) that was not diagnosed until 4 months. She had 8 months of hip treatments in which the final three months were in a Spica cast. The cast went from just above her belly button to her ankles. Caroline loves pretty much everything as long as she is not hungry or sleepy. She loves to be outside, she loves her doggies, and she loves her mommy and daddy the most. Caroline's mom says, "Caroline is a true joy and an amazing little girl. It has been one emotional journey, but I wouldn’t change a thing. I am looking forward to seeing God’s plan for our little miracle."

Check out Caroline's mom's blog

Veronica - 9

Veronica was diagnosed with Turner Syndrome at 6 years old.
She has various medical issues-Long QT, IBS, recurrent upper respiratory illnesses and Aspergers. In spite of all this she is a fire ball of activity. Her favorite mode of transportation is somersaults everywhere she goes! She is a great actress and Drama Queen - friendly, loving and bubbly! Veronica loves to read and anything to do with science.

Alessandra "Ali" - 6 months

Ali has classic Turner Syndrome (45 XO.) that was diagnosed at birth. She loves to eat applesauce and bananas! Some of her favorite things that she loves to do are... SMILE, play with Mommy, Daddy, Papa and Mema and she loves, loves, loves to roll over! Her mom writes, "I am so blessed to call her my daughter/miracle!"

Josslyn Maren - 6

Josslyn is currently in Kindergarden. She loves to play with her dog and siblings. She wants to be a Veterinarian/Zoo Keeper when she grows up! Check out her mom's blog

Emma Rayne - 7 months

Emma was a definite miracle and blessing to her family after a stillbirth (Emily) at 28 weeks and a miscarriage. Emma had hydrops and a cystic hygroma that resolved at 28 weeks. She loves her Laugh and Learn school house clock and her little pink pig that attaches to her car seat carrier. Her favorite thing in the world right now is her 4 year old sister Erika Shae. She looks up at her and you can tell she already adores her. Currently her day consists of physical therapy once a week to try to get her to sit up and visiting her Grandma Bollmer. She is a very curious child and it is funny to watch her watch people. She is also starting to become an avid cartoon and history channel watcher!

Ainsley Grace and Aubrey Lynn - 15 months

Twins with mosaic Turner Syndrome. Often referred to as "my tinkerbugs" by their mom. They are your typical happy-go-lucky, social toddlers, they just happen to be smaller. They both like little people toys and mega blocks, The Wiggles, Mickey Mouse Clubhouse, and being outside and swinging in their swings. They are both advanced for their age in certain areas, so even though they may lack in certain areas they definitely make up for it elsewhere.

Ainsley is the more serious of the two and prefers to play quietly, she is so content reading books, her current favorite is 'Go, Dog. Go!' by Dr. Seuss. She walks around saying "go dog, go" all the time, then she woofs. Her favorite part is at the end of the story when they go to the dog party because her mom sings "Who Let the Dogs Out" and she dances around. Ainsley has glasses, but doesn't really like to keep them on.

Aubrey, "my tiny mighty", as described by her mother is definitely the clown of the two. Despite all of the ordeals she has gone through she is one of the happiest little girls ever! She does have congenital heart defects, but she has loads of heart! Aubrey also loves to read and dance. Her favorite book right now is Farley Farts, thanks to her adoring Aunts we own a book with farts in the title and that makes fart sounds. If anyone says Farley both Ainsley and Aubrey start making raspberry sounds with their mouths.

Juliana Grace Rose

Juliana has Classic Turner Syndrome 45x, diagnosed in utero with an amnio because of a 16cm septated hygroma and hydrops. She was born at 35.6 weeks on June 2, 2011. She had CoA and hypoplastic arch repair at 3.5 days old.