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.

The Burden of Motherhood

Everyone is sleeping, and except for the roar of the dishwasher, the house is silent. Although I should crawl into bed myself, I can't escape my mind tonight. Today at work I learned that one of our interns, a recent college graduate, lost his life this weekend. It was a tragic accident, completely unpredictable and there is no one to blame. There's no answer as to why it happened, but even if there was, I don't think it would matter.

Even with the few interactions I had with him over the course of the last year, I knew that he was a wonderful person, respectful, hard working, full of integrity. I wonder about his life outside of work...did he get to experience happiness? Was he excited about life when he woke up each morning? Would he have chosen a different path if he knew that his life would be cut short?

My body aches for his parents. How will they ever come to terms with the fact that they won't be able to hold their son again? Hear his laugh? Look into his eyes?

I can't help but examine my own life and compare how I'm living to how I want to be living. How can I make the changes I desire but remain patient in the process?

As a mother, I can't push past thoughts of losing my own children. Imagining such a thing brings a paralyzing sadness over me. How do I ensure that Mae and Otto stay safe always? What can I do to guarantee that they are never taken from me? And, at the same time, how do I teach them to experience happiness? Feel excited about life each morning that they wake? Choose their paths knowing life is short?

These thoughts and worries are one of the great burdens of being a momma, a burden that I willingly carry knowing that the joy that comes with it, the deep love that comes with it, far outweighs the burden itself.

'i ask not for a lighter burden but for broader shoulders.' - jewish proverb