Dwarfism Awareness 2015

Everyone knows that October is #BreastCancerAwareness month, but did you know it’s also #DwarfismAwarenessmonth?
So do a self exam or get a mammogram and spend this month learning about #dwarfism.
Last year at this time we had just gotten Cooper’s #achondroplasia diagnosis and we were meeting with Geneticists trying to prepare for what to expect for our future. It was such a scary time. When we decided to announce to the social media world what was going on with Cooper we used #dwarfism hashtags in our posts. Soon we meeting other parents from all over the world in our same exact situation. Suddenly we weren’t alone and we were given so much hope and encouragement seeing their darling kids living normal lives.
During October those moms shared facts and tons of information about Dwarfism. It was unbelievably helpful for us as soon to be parents and opened our eyes to a world we had only seen on #littlepeoplebigworld. So this month I’ll be doing my part and sharing things we’ve learned on this crazy journey. I hope that we can spread awareness because knowledge is power. I want my Cooper to grow up in a world where his differences are embraced and loved. Because he’s #justsmallthatsall.

 


There are over 200 different types of #dwarfism. Cooper has #achondroplasia which is the most common form of dwarfism. Achondroplasia (or Achon for short) is characterized by having short arms and legs. You would think that having short extremities would be because of a lack of growth hormones, however that is not the case. The easiest way to explain this is using a plant metaphor: If you over water a plant, it cannot grow. That is the case with Cooper’s bones. His growth hormones are essentially flooding his body, inhibiting his bones from growing and developing normally. That’s what makes Coop #justsmallthatsall.

 
DOES DWARFISM RUN IN YOUR FAMILY?
No. Cooper is 1 of the 80% of kids born to average height parents. #Dwarfism is a genetic mutation that occurs at conception. Dwarfism is now a part of Cooper’s genetic make-up and it will be a gene he can pass on to his kids.
WE WON THE GENETIC LOTTERY

Cooper is covered in rolls. This is because he has enough skin for average height bones. A friend of ours recently told us they call them achon stripes. We love Coop’s achon stripes and hope he always wears them with pride!

Did you know that people with #achondroplasia are usually no taller than 4’10”? Our Coop may be small, but he makes up for it in personality!

Did you know that the word midget is considered highly offensive?
We didn’t know until we became a part of the LPA community. Terms considered acceptable are: an individual with dwarfism, little person, LP, but preferably just Cooper…or a Muggle. We are ok with being Muggles.

Respiratory issues are common in kids with #achondroplasia. The most common problem is sleep apnea. There are two main types of sleep apnea: central apnea & obstructive apnea. Central apnea is when the brain doesn’t tell the body to breathe, this is usually because of spinal cord compression. Obstructive apnea is when there is a blockage in the breathing canal, usually cause by tonsils and adenoids. Kids with #Dwarfism have sleep studies and are routinely followed by geneticists, ENT’s, & neurosurgeons to prevent any problems.
Cooper had an MRI at 3 months which showed severe spinal cord compression so he underwent a decompression surgery eliminate the risk of any central sleep apnea. We also meet with an ENT tomorrow to have his tonsils & adenoids checked.

See those adorable squishy hands? Those are my very favorite part of #achondroplasia. Coop’s hands have short fingers with a space in between the middle and ring finger. They are called trident hands, or starfish hands. We LOVE LOVE LOVE Coop’s little #starfishhands.

Did you know that kids with #achondroplasia have can have chronic ear infections because of their tiny ear canals? Thankfully Coop has never had an ear infection. But we did meet with his ENT yesterday, and Coop does have fluid on both of his ears. They want to check his ears again in December and if he still has fluid then he will need tubes.

See Coop’s curves? It’s called Kyphosis. It’s pretty common in kids with #achondroplasia. As soon as he starts walking the curve should straighten out and could curve the other way called Lordosis. We will see an Orthopedic in a few weeks to have his spine measured.

We like big butts and we cannot lie. #Achondroplasia kids are blessed in this area.

Today’s #dwarfismawareness post is stollen from the @museelouvre. This is BES, the Egyptian God of Children. Bes is a dwarf. The Egyptians worshiped dwarfs and elevated people with #dwarfism to royalty and made them advisors to the Pharaohs.

Cooper has a physical therapist who comes to our house every other week. Kids with #achondroplasia tend to be slower to meet milestones because of their low muscle tone. PT has taught us so many great ways to help Coop. Early Intervention will also help us as Cooper transitions to preschool and with any classroom adaptions he may need later on.

Exhibit A: Achon Splits.
Kids with #achondroplasia have loose joints and ligaments, which makes them extra flexible. And cute. And adorable.

WHAT ARE COOPER’S CHANCES OF HAVING A CHILD WITH DWARFISM?
If he marries an average height person(AH): 50% chance of having an AH child, 50% chance of having a child with #achondroplasia.
If he marries a little person (LP): 50% chance of having a child with dwarfism. 25% chance of having an AH child. And 25% chance of having a double dominant baby.
Double dominance means that the baby has inherited two dwarfism genes, which is not compatible with life.


WILL COOPER BE ABLE TO DRIVE?
Yes. Dwarfism doesn’t limit anyone from being able to drive. There are pedal extenders that help people reach the pedals. Often individuals with #dwarfism have their air bags disabled to prevent serious injury in the case of an accident. There is even a famous race car driver @rico_abreu who has #achondroplasia like Cooper. So in 15 years watch out for Coop in his Mini Cooper.

They have linked the exact gene mutation responsible for #achondroplasia to Fibroblast Growth Factor Receptor 3 (FGFR3). The gene is carried by men. It is rumored that 1 in 3 men could carry a mutated gene sperm, and the odds of that specific sperm implanting are astronomical. Like I said, we won the gene lottery.

My mom told me I need to dress my child. But did you know kids with #achondroplasia usually run at a higher temperature than AH kids? Cooper is always hot and sweaty. So we go naked a lot. Sorry, not sorry.

A controversial topic of discussion in the LPA community is about finding a “cure” for #achondroplasia. There are limb lengthening procedures that require years of extensive surgeries. There are also pharmaceutical options of growth hormones and steroids for longer limbs.
It’s wonderful to see the advancements in science and to give individuals options. But the controversy with this is Achondroplasia is not considered a disease which needs to be cured. Individuals with #dwarfism live happy and successful lives without painful and dangerous procedures. But with that, each person has a choice. We will support and love Cooper no matter what. We want him to be informed of all his possible choices and to choose for himself. He’s perfect in our eyes. Education is key and I think it’s important to spread awareness about these hushed topics within the dwarfism community.

When we first got Cooper’s #achondroplasia diagnosis we started noticing simple things around us and it started giving me major anxiety. How would Cooper reach the light switch? How would he get a cup out of the cupboard? How would he wash his hands in the sink? How would he reach the toilet? How would he sit in a desk at school? How would he dance with his prom date? How would he go skiing? How would he grocery shop?
All of these little things that we take for granted everyday would potentially pose a problem for our Cooper. It scared me as a mom. But over time I’ve come to realize that these kids are so resilient and figure out their own way to do things. It’s still scary to think about but I know Cooper is tough and will be just fine in this big world. He is our Cooper Star and he has a big, bright future ahead of him.

OCTOBER 25th

Wearing our GREEN for National Dwarfism Awareness Day!



It’s almost November and #dwarfismawareness month is almost over. The past week has been crazy so I haven’t posted much about #dwarfism, but I hope that everyone has learned at least one thing this month. When Coop was first diagnosed a friend sent me the Welcome to Holland story by Emily Pearl. The story is by a mom who’s son is diagnosed with Down’s syndrome and she likens the experience to planning a trip to Italy and ending up in Holland.
That’s exactly how our journey has been. We planned for Rome, with Football games and 6’4” like daddy. But we ended up in Holland knowing nothing about this country we didn’t plan on visiting. But Holland has been incredible. If anyone has any questions please feel free to ask. We are happy to answer any questions.

We just want to say thanks for all the support during #dwarfismawareness month. The comments, likes, shares, tweets, wearing green, etc. It all means the world to us. Thank you for loving and supporting our Cooper.


Advertisements