You know you’re at an LPA Conference when there are noticeable accommodations at the hotel…
How awesome is it that the Red Rock Hotel in Las Vegas made these adjustments to make sure everything was accessible to everyone? I love it!
Becoming a part of the LPA community a year and a half ago has opened my eyes to so many thing. I had heard about Dwarfism before we had Cooper, but I now realize there was so much a didn’t know. We watched Little People, Big World on TV and we thought that gave us a basic understanding of life for a Little Person. But now, as a mom of a Little Person I think about the realities of it. Like how to reach the top elevator button if you’re by yourself? How to insert your hotel key into a high slot just to press the elevator button? How to unload a top loading washing machine? How to potty train my almost two year old who still can’t walk, let alone reach a normal toilet? How to know if our doctors in Salt Lake City know as much about Dwarfism as the specialists in far away states?
We every year the LPA holds a large National LPA Conference (this years is in July in Boston) and then there are smaller regional LPA Conference’s around the states. This years was in Las Vegas and it was for the western US states. We were so thrilled we were able to make this trip possible and take advantage of this incredible opportunity.
I was looking forward to this trip because I was planning on finally meeting so many people that I have “met” on social media but had never actually talked to or met in person. I was also looking forward to getting to meet doctors from the dwarfism medical advisory board who would be there to give medical consults and seeing LP’s for free.
The first night of the conference was a Welcome Banquet to just mingle and get to know everyone. And look who we ran into! AMY ROLOFF! She spent a good 45 minutes just chatting with us and telling us all about her experience being a POLP (parent of a little person). She shared several things she did with her kids to make Zach not feel any different and how to help him become the strong man he is today. She was unbelievable sweet and it was so awesome to sit and hear words of personal advice from someone we have looked up to for so many years. It was an honor to meet her and tell her how much of an influence she has had on our family. When we first found out about Cooper’s diagnosis we tried to learn as much as we could from online. And what we found online scared us to death. It was always worse case scenarios and nothing but medical issues. But then we would turn on Little People, Big World and we saw the Roloff family smiling, and happy, and living a normal life. And it brought me so much comfort to watch them and hope that my baby can grow up to be just like them. (and yes I’m literally crying typing this, that is how important this woman is to me!)
We also got to meet this awesome woman! This is Allison Warrell, she has Achondroplasia like Cooper. And she is a body builder! A few years ago she decided to change her life and she documented the whole process. Check out her incredible transformation and all of her awesome advice! She also started a health and fitness group especially for LP’s! She’s great and we LOVE her!
And did I mention Cooper was excited to show off his muscles to Allison? He was pretty impressed with hers too!
The welcome party didn’t start until 9 PM, 10 PM our time, and Cooper was pretty fussy and tired by the end of the party. We were just on our way out when this sweet came up to us and got so excited when she saw Cooper. She asked what his birthday was, we told her November 5th, then she said please stay right here and she ran away ecstatic! Then she returned with these guys!
Meet the Blejski’s! This sweet little girl is Emma and her mom Carolina. Emma and Cooper were both born on the same day! With the same type of dwarfism! I remember it was when Cooper turned 2 or 3 months old. I had taken Cooper’s photo each month with month sticker. I remember I had just posted it and then I saw another darling picture that was posted the same day, with the same month sticker, and those same visible achon rolls. I started balling right there and then. Added this random lady on facebook and began chatting with her immediately. It’s like we just had this indescribable connection from the very beginning with our kids. Call it fate, but I was destined to meet this woman and her family. (again, more tears! I’m hormonal, but these people are a big deal to me)
I remember on the morning we had Cooper, we had about a 30 minute wait before the OR was ready for my surgery. We were sitting there really nervous about having a baby. Tommy was white and looked ready to puke. I was so excited to not be pregnant. And my mom said out loud, “I wonder if there will be any other achon kids born today?” I always kind of just figured no since is was pretty rare. I assumed Cooper was the only one. Then we found Emma. Cooper was born at 8 in the morning, Emma was born at 8 at night. These kids are two of a kind, and I’m so grateful for friends all over the world that feel more like family.
Then we met Britney! We love Britney, and so did every other kid at the conference. She was always where the party was had a way with kids. Except we were never able to get a great photo… but look how much fun they had!
Saturday was the busiest day of the conference. We had doctors appointments all morning, parents meetings, medical panels, and just craziness with a baby who needs a nap. So even though we weren’t staying at the Red Rock, we ended up getting a room that day and staying that night. That is my one bit of advise to others going to future conferences, just get a room! It’s so not worth the money saved, just do it and enjoy the conference.
This was one of medical panel that we sat in on. See those guys at the front? Those are a few of the doctors who know THE MOST ABOUT DWARFISM IN THE COUNTRY! Most are on the medical advisory board for the LPA, and they seriously rock. I felt a little star struck to be in the same room.
At the parent meeting we all got to discuss our questions and frustrations about our children’s medical issues. The director Jon, summarized all of our concerns and started the medical panel by having all of these specialists address our issues for the new parents first. It was AWESOME! Then they opened it up for open discussion and it was so neat to get to hear everything everyone had to say. Loads of info, tons of advice, and a wonderful experience.
Then the rest of the day those doctors did personal appointment with anyone who signed up. I’ll do a whole separate post on our appointments, because we got SO MUCH info!
Then we walk down the hall and BAM! Terra’s Little Family! I was so excited to meet cute Penny and I fell in love with this family watching Little Women LA and Terra’s Little Family.
Penelope also had a decompression surgery around the same age that Cooper did, and it was so great/hard for me to watch them go through that and share their exact same experience that we had. I love that they spread awareness and let people experience their pregnancy and life with the world. I got to cry with them when they had their first ultrasound, when they got Penny’s diagnosis, when Penny had anesthesia for the first time, her MRI, and then her surgery. It was great to see that we weren’t alone, they went through all the same things as us, plus it was cool to look at it from their perspective as LP’s. I felt that it gave us so much insight into Cooper’s life later on and when he decides to have kids. So thank you Terra & Joe for sharing your life with us!
Joe also is a pretty awesome drummer and Tommy was so excited to meet him. They had lots to talk about and it gave Cooper and Penny time to play. They were so cute watching each other and Penny would just grin at Cooper. It melted my heart! These kiddos are something special!
So it was awesome to meet them and Terra’s brother. All of them were such sweet people and we totally approve of them as future in-laws!
Then Saturday night was when the party started. There was a huge banquet and then later on a big dance party. We had a blast!
Holly, Tod, Lennon, & Larry came with us and it was so fun to introduce them to all of our new friends. Lennon & Larry were even the stars of the dance floor and had some killer moves. Larry made friends with Mikey (another achon kid Larry’s same age) and it was so cool to watch them show each other their dance moves, and to watch Mikey figure out his own way to do the moves Larry was showing him. I’ll have to figure out how to post video AND pictures on this site. But it really was something to see.
My very favorite part of the night was watching the Little Little’s (just a year or 2 older than Coop) out there shaking it on the dance floor. Kids with dwarfism overheat really easily and have a harder time regulating their internal temperatures than average height kids. So these Little Little’s were dancing the night away and sweating to death. We saw one little boy who was just the cutest run over to his mom so she could wipe the sweat off his face, then he ran right back to his friends so he could dance more! It made my night!
Tommy asked for a picture with Frank, the whole night was old school Vegas themed. And the boys took some fun selfies while we waited for the dinner line to go down.
Thanks again to Holly & Tod for making this such a great trip! And also to the countless volunteers who made this conference possible! A lot of work went into it and we so appreciate it!