Dwarfism

Another stop along the way

Sleep apnea

We are currently awaiting results of Nora’s most recent sleep study. Our hope is that her apnea has lessened or at the least, it has not become worse. We are experimenting with treatment options at this time since the most popular course of intervention has become a bit controversial.

Nora is taking singulair which is an asthma medication. It also can decrease inflammation in the nasal passageways and help with congestion that contributes to obstructive sleep apnea. We will soon find out if the medicine has been helping.

If it’s not helping, we will explore other options. Adenoid removal, tonsillectomy, cpap mask, Flonase steroid treatment…

Cpap/bipap

It has come to my attention that cpap is not the best choice for toddlers with achondroplasia. It simply masks the underlying issue and can also impact the facial structure causing issues down the road. Since an infant and toddler are still growing, a mask worn nightly for 8-12 hours can put too much pressure on juvenile facial bones leading to an even more shallow mid-face, a more depressed nasal bridge and can cause issues with dental structure as well. All of these things can lead to increased breathing problems and more severe apnea. Nora’s mid face hypoplasia (underdeveloped maxillary, nasal and jaw area) already puts her at risk for increased apnea and a cpap may be more harmful than helpful in the long run.

In extreme cases of midface hypoplasia and apnea, surgery is recommended. This surgery can change the facial structure and allow for a more open maxillary and nasal area.

Many children use the interventions I have discussed here. However, some of the treatments are not what is best for Nora at this time. Together, with our team of specialists, we are trying to figure out what can give Nora the best and healthiest sleep.

So, for now, we wait. We worry. We wait some more. We enjoy the smiles and giggles. We are thankful for a happy little girl. We snuggle and watch πŸ’•πŸ’•πŸ’•

Dwarfism

Part 2 πŸ’•

This came at the perfect time. I was lost, afraid, and so unsure. These words put things in perspective and helped me at a time when I felt my heart was shattered into a million little pieces. It felt as though we’d been dropped on a desert island. No one around us could understand and we had a lot of figuring out to do. One thing from this writing that didn’t ring true is that I didn’t lose a dream or need to mourn the loss of an average height child. I was not sad about having Nora. She WAS amazing. She IS amazing. She WILL be amazing. I was worried about the world we live in and if I knew how to do the best for her.

This poem came at a time when we were flooded with information and appointments, procedures and what ifs. It came when we were just taking our first steps over the border into Holland. It was two months after Nora was born. We had no idea where this journey was taking us.

We have come so far since I first read this.

Looking back I wish I had known all I know now. Holland is beauty. Holland is joy. Holland is so much love and a billion smiles. Holland is safe. Holland is strength. Holland is friendships and families I may have never come to know. Holland is so much more than I ever imagined it could be. And, we get to travel with the cutest little tour guide.

To all my fellow POLP or any parent of a child with differences, enjoy your journey through Holland. Celebrate the scenery. Take in all the amazing and wonderful things that come your way. Applaud the milestones. Holland is better than Italy…after all, there are tulips and windmills. Sit back, relax and enjoy the ride.

πŸ’•πŸ’•πŸ’•

Dwarfism

LPA-community, friendship, support and fun

It seems like the perfect time to write about something that has forever changed us.

It’s dwarfism awareness month and I hope by the end of it I have spread awareness, encouraged acceptance, fostered kindness and shared worthy knowledge.

At the beginning of this journey, I was lost. We were lost. Worried and fearful. Unsure, uncertain and full of anxiety. I was led to a place that helped me get out of that hole. It lead me to people who shared my same experiences. People who have already been there…visited Holland. People who showed me that although the path was full of twists and turns, the journey was beautiful. I was assured and reassured that all would be okay. Nora would would be okay. We would be okay.

The Little People of America.

This organization is the heart of knowledge, research, friendships, facts, medical information, links, and education all related to short stature. If I had not stumbled upon their site I never would have found our local district and all the people I have come to know over the past year or so.

This group, this community, was the open door we needed. Parents of all heights have shed light on confusing medical issues, educational needs, social awareness concerns, terminology, specialist appointments, local resources, milestones and development, equipment, financial resources, and the list goes on and on and on. If only I had known them when Google had become my “best friend” and doctors and specialists kept “encouraging” testing during my pregnancy. More importantly, this group has helped us make connections. We are part of a community of parents and children who can relate. Sometimes being the parent of a child with differences can feel lonely and isolating. I’ll never forget the parents who reached out when I needed it most. They were the light I needed…the clarification…the road map. Now, my hope is that I can be that for others.

We have had so much fun getting to know other families over the past year and we are excited for what’s to come!

I am so thankful that 62 years ago a man named Billy Barty decided to invite some friends to join him in creating the group that has become today’s LPA. It started small but the mission is the same…

“LPA is dedicated to improving the quality of life for people with dwarfism throughout their lives while celebrating with great pride Little People’s contribution to social diversity.  LPA strives to bring solutions and global awareness to the prominent issues affecting individuals of short stature and their families.

Barty’s goal was to show the world that differences should be celebrated. People of short stature can be and do anything they set their mind to and the world should know about it.

Dwarfism

Bracie is back πŸ’•

8 months ago we were faced with yet another big decision related to Nora’s treatment plan.  We had just switched orthopedic specialists because we were dissatisfied with where we were at and got the feeling our little love was being placed in a box with every other infant diagnosed with achondroplasia.  When we switched, it was hard.  There were long drives still and even longer waits in the clinic office.  She was then diagnosed with kyphosis and hand/finger deformities. 

This is what we asked for when we made the change in specialists.  We wanted answers and someone to listen to us, to hear our concerns.

After our initial visit, I was kicking myself for pushing for the change.  I wanted to be heard but I didn’t know we would leave with even more things added to our checklist.  More appointments. More poking. More tears.

Our plate was already so full. 

That day we left with a prescription for a back brace to try to help with the curvature in Nora’s spine.  The idea is that the brace would help support her and straighten her spine while she was still gaining strength and before she was mobile.  The brace was a way to slow things down and hopefully correct the spine while her body was still young enough and still growing.  At a certain age it becomes more difficult to make those kinds of corrections and further down the road, if it is bad enough, surgery is the answer.

We also added a hand specialist to Nora’s treatment team that day.  However, we had put those visits on hold since it would involve another brace for her hands, which were not proven to be effective and was going to be more of trial and error.  We chose to pick out battles and work through one thing at a time.  The specialist could not say with certainty that the bracing would help at all and was confident that the only thing that could help would be surgery far down the road.  I’d like to report that although Nora continues to have some curving in some of her fingers, her fingers and hands are stronger and fully functional (in fact her fine motor skills even with low muscle tone and strength are far beyond her age range).

Many times in the last 20 months, as POLP, we have been given direction.  There are many procedures that are just standard practice for infants and toddlers with achondroplasia.  These things were more black and white and felt necessary.  Other times, we have been faced with making the final decision.  As parents we have had to weigh the pros and cons and figure out what is best for our little love.  This has been quite a challenge and weighs on my mind constantly.  What if we make the wrong decision?

The brace has been one of those times.  There is much controversy about bracing infants, toddlers and children with achondroplasia. Some experts say it can’t help and that the spine will straighten in time and improvements are often seen once the child is walking. Maybe it restricts too much movement or slows down milestone development. Maybe it is pointless and a waste of time.

Maybe…

Nora took a break from using “bracie.” She figured out how to undo the Velcro and take it off. She also outgrew it a bit. At 18 months, my little love started walking. This past week we went back to adjust Nora’s brace at the recommendation of her orthopedic specialist. No one knows for sure if the brace is necessary but we were assured that it can’t hurt. If anything, it can only help. So, Bracie is back and Nora is not happy about it. We will follow up on her spine in 2-3 months to see if there are more improvements and if she will continue to need bracing.

We will get through it. We always do.

Dwarfism

Dream Big πŸ’•

This week it came to my attention that an extremely popular country band used a little person as a “prop” in their final act during a concert at Fenway Park. I’ve heard and read stories of this and other degrading acts of inhuman treatment towards people with dwarfism and I have done my research but this incident stuck for some reason…maybe because it was so close to home or because it happened at a popular venue I’ve attended…maybe it was because I know so many people who probably saw it. I’m not sure what it was, but it stuck. When I read the story it felt as though someone ripped my heart right out of my chest and stomped all over it. It took my day away from me. It definitely aggravated the mama bear. I let it.

I know that even if Nora had never entered our lives, I would still hate this. I would still hate that we live in a world that allows people to treat other humans as objects or props or jokes. I would still hate that there are forms of entertainment such as “midget wrestling,” “dwarf tossing,” “dwarf bowling” and others. It makes me angry to even type it. I know I would still think it’s disgusting.

Nora makes it all much more real.

I will never understand what it feels like to be a little person knowing this exists or even seeing it happen right before my eyes. I can never understand fully since I don’t walk that path. But, I will always know how it feels to be the mother of a child with dwarfism and know that these things exist. I will always carry with me the worry and fear. I will always have to think about the state of our world and how people will treat my little love.

It’s heartbreaking.

I dread the day she asks, “Why?”

Many people believe it is a little person’s choice or right to participate in these types of entertainment jobs. I agree. It is their choice. Some would argue that there are not enough people willing to hire a person of short stature in more desirable positions and less demeaning jobs. Therefore, a person with dwarfism must take what they can get. Settle.

I like to believe…I have to believe…that people with dwarfism can be or do anything they dream. Our society continues to stereotype which leads to less opportunities (or the belief that there are less options out there) for people with dwarfism. If things like “midget bowling” and “dwarf tossing” didn’t exist, we would not still be having this discussion in the year 2019.

My daughter is not a joke. She’s not a prop or an object. She will grow up knowing her worth. My little love will dream big.

Dwarfism

I see you

For all the parents of amazing kids who just need a little extra…

Throughout our journey to Holland so far, I’ve met many parents of children with differences…some physical, some medical, some educational and cognitive and some with a combination of many differences. The one thing we all have in common is, in our heart of hearts, we just want what is best for our child. Safety, love, acceptance and understanding.

To the parents worrying about how their child will be treated or seen by others, I see you.

To the moms who sacrifice sleep and sanity worrying about a sick child, I see you.

To the parents who love beyond measure, I see you.

To the dads watching their child go through yet another medical procedure or exam, I see you.

To the moms dropping their child off at the first day of school, worrying all day, I see you.

To the parents who spend countless hours researching and networking to get the best care for their rare child, I see you.

To the moms who balance work, home, family, appointments, specialists and everyday life, I see you.

To the dads who advocate and fight for their child everyday, I see you.

To all the parents of kids who need a little extra, I see you.

You are strong.

You are loving.

You are doing your best.

You are amazing.

Hugs.

Dwarfism

Made this way πŸ’•πŸ’•πŸ’•

Now that my little love is toddler-ing around…walking, playing, talking, climbing just like other kids her age, the stares and comments are flooding us. Most of the time it’s about how cute she is, how tiny she is, or how she’s too small to be walking around. I totally get it. I am amazed by her daily. I am in awe of her abilities, her strength, her social skills and her charm.

She is tiny. It does seem like she is a “baby” walking and talking well before she should. People are shocked when I tell them how old she is. She seems too small to be up and about and too smart for the size she is.

The other day, there were lots of looks, glimpses in our direction, double takes as she strolled by in a sea of children towering over her. Parents loved her cuteness and some just watched her. Others panicked as their same age, average height toddlers ran past her playing for fear they would knock her over, hurt her unintentionally or play with her as toddlers do. I didn’t for a moment, feel angry or upset. But, this day gave me a sneak peek into what childhood will be like for Nora. She just wanted to play as all the other kids were doing.

One woman kept insisting that her son shouldn’t interact with Nora because she was “just a baby” and “so small.” She was fearful he would hurt her. Finally I just came out and said, “She’s actually 1.5. She can handle it.” Nate kept telling other parents, “She can run and walk and talk. She’s not a baby, she’s fine.” Right now, we are her advocates. We explain and reassure. Her big brother is the best supporter and protector. Someday, it will be up to Nora to let others know.

Something else that’s come about related to Nora’s appearance and differences is her squishy adorable rolls. We had an incident not too far back where a woman shouted, “look at those big fat legs on her!” in the middle of a crowded area. It caught us off guard and honestly didn’t hit me until moments later.

If I could go back and if I thought it would make an impact, I would have sat down with that woman and explained. People with achondroplasia have excess skin because the gene affected only impacts bone growth, not skin growth. So, while the bones in the arms and legs grow slowly the skin grows at a typical rate. This is what causes those adorable, squishy, beautiful rolls. It’s the way she was made. And it’s perfect.

People often comment on Nora’s cute rolls and tiny hands but the way this came out really struck me and my son. My little love is 1.5. She is smart and social and understands a lot. In a short time, comments like that will start to make sense to her. People think she is a baby and cannot understand but as she ages and is still small in size, those comments will be understood. Nora will start attaching those words to herself.

My point. Please choose your words wisely. You just never know. Comments about the appearance of others can directly affect a person and her self worth. Especially a person with outward physical differences.

Differences need celebration not judgement, fear and ignorance. Choose kindness.