Tuesday, November 10, 2015

NOTHING To Fear!

October is such a special month for our family!  It used to just be a month full of Fall activities and Halloween celebrations.  Now it includes celebrating Liam and educating our family and friends about Down syndrome.

Last month was Down Syndrome Awareness Month.  Each day I took a picture of Liam and shared a fact about Down syndrome.  I just wanted people to see exactly what Down syndrome is and show them that it really isn't something to fear!

Parenting ANY child has its ups and downs, but I just wanted to share Liam's beauty and shatter some misconceptions about Down syndrome. I shared these pictures on Instagram and Facebook, but I wanted to share them on my blog, too! 

DAY 1: Happy Down Syndrome Awareness Month! The number one thing I want people to know about Liam is that Down syndrome is only a tiny fraction of who he is. He is a happy, healthy, smart boy just like any other. We encourage everyone to look past Down syndrome and discover the individual. Liam is not a "Downs" child and we don't like to hear "I'm sorry" in regards to his diagnosis. We're not sorry! He is Liam and he is loved! 

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DAY 2: In a recent study, nearly 90% of siblings indicated that they feel like they are better people because of their brother or sister with the developmental disability. I have no doubt that Liam changed Dylan, Lexie, and Lily's outlook on life. Their love for Liam is evident in every picture I take. Even more important, they truly care about everyone. Ability or race isn't even a factor in their thinking!

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DAY 3: In 1983, the life expectancy for a person with Down syndrome was only 25. Today, the life expectancy is 60. I have no doubt that number will continue to rise!


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DAY 4: Although it varies with each person, people who have Down syndrome tend to be small in stature. At just over 2 years old, Liam is 22 lbs and 32 inches. He is the size of an average 1 year old boy. The outfit he was wearing for this picture today was 6-9 months, but he typically wears 9-12 months. I love my tiny dude!

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DAY 5:  Liam's gorgeous blue eyes have always captivated me! Those little white flecks are called Brushfield spots. These spots are normal for children, but are also a feature of Down syndrome, occurring in 35-78% of newborns with Down syndrome.

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DAY 6:  The average age range to walk for a person with Down syndrome is 2-4. I was scared by that statistic and envisioned carrying my 4 year old around. Liam, however, started taking unassisted steps at 17 months, but didn't string more than a few steps together until 22 months. At that point, he took off and never stopped! 

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DAY 7:  A characteristic of Down syndrome is small and/or low-set ears. Ear infections and hearing issues are common, and many kids with Down syndrome end up getting tubes. Thankfully, Liam's hearing is perfect and he has only had 2 ear infections. He does have tiny ear canals, but it doesn't cause any harm. It just makes examining his ears a bit tricky!

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DAY 8: It is common for babies with Down syndrome to teethe late (12-24 months is the norm) and get their teeth in an unusual pattern. Teeth may be smaller than average, misshapen, and they may even be missing some teeth. Liam was 13 months old when he got his first two teeth (bottom middle, which is normal). His top 2 molars immediately followed. Liam now has 16 teeth, including all four 2-year molars, which usually come in last. Still waiting on all 4 canine/eye teeth! 

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DAY 9:  (From the NDSS): There is a 50-100% incidence of obstructive sleep apnea in individuals with Down Syndrome, with almost 60% of children with Down syndrome having abnormal sleep studies by age 3.5 - 4 years. Liam doesn't have any issues right now, but he will have a sleep study done between ages 3-4.

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DAY 10: Many people underestimate the capabilities of people who have Down syndrome. What I've learned is this: Do not think in terms of can't. He can and he will.

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DAY 11: The need for glasses is much more common in children with Down syndrome. Tear duct abnormalities and early age cataracts are also common issues. Liam has been under the care of an Opthamologist since he was 6 months old due to mild tear duct blockage. It cleared up on its own, but he gets a yearly eye exam to monitor his eyes. So far so good! 

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DAY 12: While it's true that Liam is happy 99% of the time, it's important to remember that people who have Down syndrome experience emotions other than happiness, too! It's rare to see Liam upset, but when he gets hurt or angry, he puts his all into it!

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DAY 13: A common characteristic of Down syndrome is small hands and feet. At age 2, Liam finally made it into a size 4 shoe. His tiny "starfish" hands are one of my favorite things about him!

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DAY 14: A few of the common physical traits of Down syndrome are: low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all. - NDSS Liam is definitely small, but he doesn't have low muscle tone or the crease across his palm. What we hear the most is "But he doesn't have the eyes!" He does have "the" eyes. They just aren't noticeable until he smiles really big. When he does, I think that little slant only adds to their beauty! 

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DAY 15: More than half of babies with #downsyndrome are born with a heart defect. Many of them will need heart surgery (and recover remarkably fast!). While we were in shock after hearing what the doctor suspected, we were dealt another blow. We were given the 5 out of 8 babies statistic and Liam was immediately taken away to get his heart checked. We weren't able to see him for hours. Thankfully, he only had a tiny hole that typically closes on its own (apparently it is common in newborns). It did close on its own, and at 9 months old, he was cleared by the cardiologist...hopefully forever!!!

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DAY 16: Individuals with Down syndrome have a higher incidence of endocrine (thyroid, adrenal and pituitary glands) problems than the general population. No issues so far, but Liam had his thyroid checked at birth, 6 months, and 1 year. He's due for another thyroid test now, and will have one done yearly to make sure his thyroid continues to function properly. It's just a simple blood test, and they also do a CBC (Complete Blood Count).

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DAY 17: Down syndrome is the most common genetic condition. 1 in every 691 babies in the United States is born with Down syndrome each year. That's approximately 6,000 babies. Liam was 1 in 691 and we adore him!

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DAY 18: Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. (From NDSS) In most cases, it's just chance, and it occurs in people of all races and economic levels.

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DAY 19: Many people assume that only older mothers have children with Down syndrome. That's absolutely not true! The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age. When Liam was conceived, I was 32. The average age of a mother for a first birth is 30.

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DAY 20: Some people believe Down syndrome is hereditary. In most cases, it is not. Translocation, a type of Down syndrome that accounts for 3 to 4% of all cases, is the only type of Down syndrome known to have a hereditary component. Of those, one third (or 1% of all cases of Down syndrome) are hereditary. Liam does not have Translocation. His case was just chance.

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DAY 21: FACT: Babies and toddlers who have Down syndrome give the best hugs EVER. Seriously. Nothing compares. It isn't just a lower tone issue that causes them to melt into your arms. It's so much more. When I pick Liam up, he locks eyes with mine, smiles like I'm the best person in the world, melts into my arms, wraps his arms around my neck, presses his cheek against mine, and just when I think it couldn't possibly get any better, he starts patting my back. The amount of love in that single embrace is immeasurable. It takes my breath away every single time.

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DAY 22: Many babies and toddler who have Down syndrome have feeding issues. It's often due to low muscle tone or difficulty coordinating tongue and jaw movement. Liam lost a lot of weight as a newborn. It was initially thought to be low muscle tone causing him to not feed properly, and at 2 months, his amazing OT came into our lives. She was previously on the feeding team at the hospital, so feeding issues was her specialty. She came to the conclusion that his weight loss/slow weight gain was caused by him burning off more calories than he consumed, because he was nursing properly. (He still gains very slowly.) Due to her background, she insisted that Liam follow a typical feeding schedule. Because of her, Liam was eating solids like a champ at 5.5 months, drinking from a straw cup by 8 months, eating finger foods at 9 months, and using utensils at 12 months. This kid loves his food! Of course, at age 2, the pickiness is starting to set in, and he really enjoys feeding his food to my parent's dogs, and throwing his cup and utensils!

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DAY 23: Because of abnormalities in their immune systems, those with Down syndrome are much more at risk of infectious diseases, such as pneumonia. When Liam was born, we were warned that he would most likely get sick every 4-6 weeks, and get frequent ear infections. Thankfully, Liam proved them wrong! He has only had 2 ear infections, and only gets sick 2-3 times a year. The only difference is, he usually has one illness a year that lands him in the ER and requires at home breathing treatments. The last time he was sick was at the beginning of May...and that was only because he got cellulitis from an exam in the ER after a nose injury! Unfortunately, he woke up with my cold yesterday (I told him not to steal my drinks!), but he's still smiling!

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DAY 24: Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. Some people consider that extra chromosome an imperfection, but I consider it an enhancement. Take today for example. We got stuck in the rain in the pumpkin patch . He was the only one smiling and laughing!

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DAY 25: Tongue protrusion is common in babies and toddlers who have Down syndrome. This can be improved by building the muscles in the mouth through the use of a straw cup and regular speech therapy.

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DAY 26: There are 3 types of Down syndrome: trisomy 21, translocation, and mosaicism. It truly doesn't matter what type. They are all blessed with a little extra and they are all downright awesome!

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DAY 27: People do not "suffer" from Down syndrome. Liam is not suffering, and we are not suffering. And for those who doubt us, I'd love to invite you over to spend a day with Liam. The only thing we suffer from is lots of smiles and fits of laughter!

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DAY 28: When people use the word "retarded" they hurt an entire community of families. Even if the usage was harmless and it was unintentional, it's still wrong. There are over a million words in the English language. I'm certain there's a word more suitable for what is trying to be said.

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DAY 29: Down syndrome can be diagnosed prenatally through chorionic villus sampling (CVS) and amniocentesis. These tests are performed if blood work indicates a strong chance of Down syndrome or if Down syndrome markers are visible during an ultrasound. If a baby is diagnosed after he/she is born, they perform a karyotype (a blood sample is taken and analyzed). After Liam was born, it took us over 2 weeks to receive his test results. We were told we would know within 48 hours. Every day I called, and every day we were told that they were having a very difficult time getting accurate results. Grant and I began to worry that it was something worse. After 2 weeks of not knowing, Liam's pediatrician was livid. She called DURING an appointment and demanded a yes or no result within the hour. One hour later, she called me back to confirm his diagnosis. We were actually relieved it was JUST Down syndrome. I have no idea why they had so much trouble getting results. I guess he was just trying to puzzle everyone from the very beginning!

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DAY 30: Presume Competence.  

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DAY 31:  Thank you for reading all these facts for Down Syndrome Awareness Month and thank you for all the love and support! Liam's genetic makeup may not be "textbook perfect" but he has as much of a right to be here as you and I do. He has strengths, talents, and gifts to give the world. ❤
He is so much more than his Down syndrome diagnosis. He has blessed our family so much and we are so proud of him. He is just plain awesome. 

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And that, my friends, is life with Down syndrome!  It isn't nearly as scary as it's made out to be! Liam is an incredible kid who has touched our lives (and many others) in so many ways.  He is a blessing and we are HONORED to be his family!


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7 comments:

  1. Liam has to be the cutest kid I have ever seen, ever time I read your blog and see pictures of him it brings a smile to my face! What a joy!

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  2. Cute! Have you seen this? http://www.goodhousekeeping.com/life/a35379/babies-with-down-syndrome-photo-series/

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  3. He's just so darn happy in every single picture! Who wouldn't love him?! And what a blessing he is to your sweet little family. <3

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  4. Love this post, so much great information! And the pictures are to die for...precious little man you have there!

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  5. I love seeing all the pictures of Liam. Thank you for this post. I've learned a lot of things by reading your blog.

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  6. He is such a little gem. Really completes your beautiful family.

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  7. I love this so much. Mr. Liam is such a cutie and it shows how much everyone loves and adores this little guy! Thanks for putting all these facts out there! You rock, girl!

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