Dwarfism Awareness Month | Post 10

This post is from October 31, 2015. Because of life, I'm just getting around to publishing it today. 

On this final day of Dwarfism Awareness month, I wanted to share a few things that make Otto unique not because he was born with achondroplasia, but because he's Otto. He's not defined by his diagnosis, and I hope all of you will someday get the chance to meet and know him.

• He is always (yes, ALWAYS) happy. 
• When he gets excited, he moves his legs faster than I've ever seen anyone move their legs before. He's even earned himself the nickname of "Legs" at daycare. 
• Whether it's playing with instruments or dancing in the living room, he loves music. 
• He prefers to be outside. In fact, as a newborn, there were times when the only way I could get him to eat was to go outside. 
• He had a great sense of humor. Even at his young age, he knows how to play tricks and laughs at his extremely funny parents. 
• He has become a bottomless pit when it comes to eating. This is major change from one year ago. His favorite foods are macaroni and cheese (shocking, I know), raspberries, fish sticks, tater tots, ketchup and ice cream.
•  He loves his sister (and she loves him). It's so fun to see Otto make his way close to Mae when they are playing and often reach for her hand/arm/leg to hold. I'm sure that they will have typical sibling disagreements, but I can already tell that they'll be great buds.

At the end of the day, we all have something that makes us different. When we take the time to learn about each other's differences, it leads to a more understanding and compassionate world for everyone.

Thanks for reading along this month. If I've left any of your questions unanswered, please comment below (or reach out to me privately, if you'd prefer) and I'd be happy to explain more!

the best of buds

Dwarfism Awareness Month | Post 9

There is no "cure" for dwarfism; in fact, it's not a disease that requires one in order to live happily or be successful.

There is an option to undergo limb lengthening procedures that would require years of extensive surgeries. However, "there are no established medical indications for symmetric extended limb lengthening (ELL). While it may have benefit in preventing certain orthopedic and neurological complications in some skeletal dysplasias, the procedure is primarily being performed for adaptive, cosmetic, and psychosocial reasons (from the LPA)."

There is also research being done on a pharmaceutical treatment that has been shown to increase growth velocity in people with achondroplasia, although the long-term affects of such treatments are unknown.

These treatments are controversial in the LP community. And while, it's great to see the medical advancements, this is not a choice that I would ever make for Otto. We will make sure he's informed of his options and allow him to make a decision for himself when he's old enough to do so. Regardless of his decision, Otto will always have our love and support.

going places

Dwarfism Awareness Month | Post 8

"Midget" is derived from the word midge...a small, blood-sucking insect. It was never coined as the official term to identify people with dwarfism. In fact, it was created years ago as a label used to refer to people of short stature who were on public display for curiosity and sport. This was during a time when freak shows and carnivals were popular. People born with dwarfism were put on display with the intention of humiliating them. Can you imagine?

Today, the m-word is considered a derogatory slur. The dwarfism community has voiced that they prefer to be referred to as dwarfs, little people, people of short stature or having dwarfism, or simply, and most preferably, by their given name (from the LPA monthly newsletter).

I had never really given much thought to the "m-word" before learning about Otto's diagnosis. If you would have asked me about it, I probably would have shrugged and maybe even said something about being politically correct. However, knowing what I do now, I would have been wrong.

The words we choose when referring to others have meaning. When people choose to use the m-word, they are also choosing to dehumanize and degrade people who were born with dwarfism. It's not about being politically correct; it's about being respectful. This is true not only for the m-word, but the n-word, r-word, etc.

In the past year, I've seen a new vineyard change its name and brand, removing its fairytale dwarf-theme (because when people with dwarfism are used as characters and made out to be mystical, it makes them less human and therefore dehumanized REAL people with dwarfism). I've seen a school district (in McLaughlin, SD!) drop its "Midget" mascot so to be more cognizant of other's feelings. I've even seen a raisin company willingly stop referring to small raisins with the m-word!

Unfortunately, I've also see a school district (shame on you, Freeburg, IL) turn their heads and say that they value the history and tradition of their mascot more than they value compassion toward those born with dwarfism.

Change is happening and I am hopeful that the world will be a kind and compassionate place for Otto and others.

So what should you do now that you know all of this? First, think about the words that you choose to use when talking about people different than yourself. Second, when you hear others use these terms, don't be afraid to speak up and correct them. Be kind in doing so. Let them know why it's important to you. Use Otto as an example!

As I said, this is an important topic...if you have ANY questions, please, please, please don't hesitate to ask. ‪

choose kindness.

Dwarfism Awareness Month | Post 7

Otto is 15 months old, weighs 16 lbs and is 25 inches tall. He wears 6-9 month tops and 0-3 month pants. We cuff his sleeves more days than not, but I'm sure I'll eventually invest in a sewing machine and bust out my seamstress skills. | When we're out and about, I'm often asked how old my 'baby' is. As Otto gets older, more people notice that his size and his age don't quite add up. These innocent questions serve as the perfect opportunity to educate others. Most people don't know what to say, while others shrug it off, and some ask follow up questions. I'm happy to help advocate for Otto and hope the he (and Mae) will learn from my example.

future's so bright.

Dwarfism Awareness Month | Post 6

People with dwarfism can do everything that average stature people can do, sometimes just differently. Matt and I hope that our children will have the same passion for sports (ahem...running) as we do. We've been excited to see that there's great organizations that provide competitive opportunities for children and adults with dwarfism, including the Dwarf Athletic Association of America and the US Paralympics. We follow a handful of dwarf athletes via social media and love seeing their successes at the Para Pan Am Games, NASCAR races, etc. We recognize that Otto might find his passion outside of the sports world (and we'll support him if that's the case), but we love that there's no reason for him to count sports out!

go team, go!

Dwarfism Awareness Month | Post 5

Children with achondroplasia tend to have a higher than average resting body temperature. We've always noticed that Otto felt warm to the touch and sweat a lot, but we didn't realize it was connected to him having achondroplasia until we spoke with other families. He'll eventually grow out of it, but until then, we'll keep dressing him in tank tops, keep a fan nearby, and embrace the buzz cut.

sweet summer dreams.

Dwarfism Awareness Month | Post 4

Children with achondroplasia have delayed gross motor development. Milestones like sitting, crawling, standing and walking are typically reached at 10, 11, 17 and 20 months, respectively. However, there's no cause for alarm if milestones aren't hit until later. These delays are partly due to children with achondroplasia having shorter limbs and larger heads and partly due to them having low muscle tone.

Speech development can also be delayed. This is caused by recurrent ear infections or buildup of fluid in the middle ear and because of low muscle tone in and around the mouth. Additionally, doctors have said that speech can be delayed because the brain is concentrating so power much on learning motor skills that language/speech development fall behind.

Otto is 15 months old and is just beginning to say more sounds; we have noticed some improvement with this since his ear tubes were place. He doesn't sit, crawl, stand or walk, but that doesn't stop him from getting around. His preferred modes of transportation are barrel-rolling, reverse snow plowing, and pivoting on his back or tummy.

One of our specialist gave us a great perspective that these alternative ways of getting around are something to be celebrated. Even at Otto's young age, he has already become aware of how his body is built and has figured out how to make it work for him!

under the sea.

from the american academy of pediatrics

Dwarfism Awareness Month | Post 3

Some of the most common medical concerns that come along with achondroplasia include sleep apnea, recurrent ear infections, kyphosis, and hydrocephalus.

• There are two types of sleep apnea: obstructive and central. Obstructive apnea occurs when there is something (adenoids/tonsils) blocking the airway. Central apnea is when the brain tells the body not to breathe; this is typically because of spinal cord compression (when the spine pinches the spinal cord at the base of the skull due to the narrow junction of the two).
• Ear infections are common because the middle ear passageways are more narrow (also as a result of the narrow shape of the base of the skull).
• Kyphosis is the outward curvature of the spine. When the curve becomes "fixed," it can lead to bowel issues and even leg paralysis later in life.
• Hydrocephalus is a buildup of fluid on the brain and can cause increased head size and neurological issues.

So far, Otto has had his adenoids removed to help open his breathing airways and tubes placed in his ears to help fluid drain properly and improve his hearing. He has routine MRIs done to monitor for spinal compression and hydrocephalus, and he sees an orthopedist to check his kyphosis. We feel very fortunate to have great specialists, all just a short drive away!

mac and cheese ponderings

Dwarfism Awareness Month | Post 2

What is exactly happening inside of Otto's body that makes his bones grow they way they do? At conception, the FGFR3 gene, responsible for converting cartilage to bone, mutated and changed the way the bone is formed in in the long bones of Otto's arms and legs and the base of his skull. This gene is constantly telling Otto's body, "make cartilage, make cartilage, make cartilage" and so it does. However, the cartilage is not properly converted to bone. Many people compare this to a plant being constantly watered, growing less rather than more.

With the disproportionate size of his arms and legs and the narrowing of the base of the skull, there can be some medical issues and developmental delays (more on this later), but cognition is not affected at all. In fact, because the base of the skull is more narrow, the top portion of the skull compensates to make more room for the brain, resulting in an enlarged head (a characteristic feature of achondroplasia).

Please note that I am in NO WAY a medical professional, and this is just my simplified understanding of what many different doctors have explained to us. If you are curious to learn more about the science behind dwarfism, specifically achondroplasia, I encourage you to ask me question or check out the resources below.

http://ghr.nlm.nih.gov/condition/achondroplasia
http://www.ncbi.nlm.nih.gov/books/NBK1152/
https://lpamrs.memberclicks.net/assets/documents/The%20achondroplasia%20gene.J.Hall.pdf

day two.

Dwarfism Awareness Month | Post 1

October is Dwarfism Awareness Month!  Fall is wonderful with leaves changing colors, crisper weather and fun holidays, but October will forever be a special month, as it is Dwarfism Awareness month...31 days dedicated to education with hopes of inspiring understanding and compassion for Otto and the entire LP (little people) community. The next few posts are tidbits of information I've shared on Facebook over the past few weeks. I hope that you'll take the time to read, learn and ask questions.

One question that I hear almost every time that I share Otto's diagnosis with people is "Does it run in your family?" The answer is no. Achondroplasia, the most common of over 200 forms of dwarfism, is most often a result of a spontaneous genetic mutation (as in Otto's case). Eighty percent of people with dwarfism are born to two average height parents with no family history of dwarfism. That means that you have the same chance of having a child with dwarfism as Matt and me!

Check out this website that simplifies the chances of having a child with dwarfism: http://dwarfparents.com/chance-having-dwarf-child

run omg.

It's happening...

Slowly but surely, it's happening. Some days it's easy. But others, it's much more difficult that I thought it would be. Sometimes it happens with someone that I know. Other times it happens with strangers. That was the case today.

I took the day off from work to hang out with Otto today. He started coughing this weekend and wasn't napping or sleeping well, so I thought some quiet, one-on-one time might help him kick his cough to the curb. He slept in and took a longer-than-usual morning nap. When he woke up, I needed to run a quick errand to make a deposit at the bank. I had a bunch of coins, so we went inside, rather than just pulling up. Of course the tellers (all women), swooned over Otto. He's (in my completely biased opinion) adorable and has the biggest grin and bluest eyes you could ever ask for. I knew the question was coming. It always does, and it did with Mae, too. It's the natural thing to ask when you're talking to strangers about their baby..."How old is he?"

It is in that moment where I have to make a decision. How will I react when they react? Will I be an advocate? Will I use this moment as an opportunity to teach?

Today, Otto is nine months and two days old. He weighs 14 pounds, is 24 inches tall and wears 3-6 month clothing.

When I answer the question (with just a simple "nine months"), I see the wheels spinning in the teller's head. I'm sure in her line of work she sees a lot of babies. I'd venture to guess she asks many parents the ages of their children. She might even have a child of her own. Maybe she has a son that's also nine months old. Whatever the case, once I speak, she searches her mind for an answer, but doesn't say a word. In fact, that's the end of the conversation. It usually is, unless I choose to offer an explanation about why his age and size don't quite add up.

And so, it's happening. The world is starting to notice Otto's differences, starting to compare him to other children. Today, it happened with a stranger and it was hard. Not because the bank teller was rude or wrong to strike up a conversation with me. But because...because. My hope is that, in those instances, especially when it feels difficult for me, that I'll choose to continue the conversation, to be an advocate, to educate the world about how wonderful our babies are no matter how "average" or "different" they are.

best buds.

This post was written on April 13, 2015 and edited and published today. :) 

Three Things I Didn't Expect to Learn in 2014 (Part III)

Achondro...what?

I've had this post sitting in my draft folder for over a week, and honestly, I don't even know how to start. For some reason I've felt like I need to convey EVERYTHING I've learned about achondroplasia this year. Or that I need to tell a detailed story about how we ultimately found out that Otto had dwarfism. But, today I realized that I don't. I'm sure over time I'll come to share those things, but not now.

Today, I simply want to say that six months ago I learned that hearing my son cry in the delivery room was one of the greatest sounds in the world. I never expected to feel so completely happy and at peace when I heard his first screams.

I learned a lot [A LOT!] about achondroplasia and its medical "complications" and special considerations in 2014, but I think what I really learned is that some of life's best lessons are those least expected.

and then there were four...