Saturday, July 28, 2007

Ok...enough sulking...CONFERENCE REPORT!!!

Ya know how sometimes, it's so bad, and has been so bad for so long, you just don't have the strength to get out. Well, sorry you had to witness it, but I'm crawling my way out.

And I think I'm ready to tell you about the conference! This may be long...

First off...It was everything I wanted it to be for the boys. Nick and Parker. They got SO MUCH out of it! They got to go to some great classes. How to handle a bully, signing classes, how to make the most out of school. Nick went to a Transition one, about getting ready for Jr High. They each got to do an art project about, "What makes you unique!" They had a blast! Made lots of new friends, and Nick even found puppy love! SO CUTE!

Steve and I, collectively, went to all the classes. Emma, was being hard the first day, and Jack needed a nap. So we switched off. The second day, I spent more time networking, and connecting with new and old friends, and talking to vendors, then in classes. But Steve went, and these were mostly info classes anyway.

The vender's were great! These guys, are changing the world of closing clefts. If I was in charge, they would be cheaper, but hey, I can't be in charge of everything... I even said to the vendor, this makes me want to have another baby with a cleft! Just for the fact that it makes taping so much easier. He told me later he told his boss I said that. Maybe they'll use it on new fliers! Ya right. Now they just need to figure out what to do about nasal stints!! I told them, and they are getting to work on it! *grin* They also have a GREAT product for closing wounds! Check out all their stuff!

This product I was MOST excited about! I wish I had a better grip on how to get it at PCMC. I told the guy demoing it, I would be willing to come to his presentation to our Docs, as a parent. So we'll see! One of our plastic surgeons on the craniofacial team is looking into it. I'm hoping it will go in at the hospital. It has SO many great applications. I talked to him quite a bit. I'll let you know how that goes! Check it out if you haven't. I think it would have saved Jack at least one or more procedures!

Just an overview/Jenny version... They take a 3D picture, and get a mathematical version with precise measurements of the distance between two points. For example, the eyes, or the length of the nose. When measuring the nose, it will give you two measurements. From the first point, right between the eyes, to the second point just around to the tip, straight. The other measures all the bumps and ridges! SO COOL. We did Nick, and Jack. It was amazing, well not really, but the difference between their straight and bumps numbers were so different. Jack's numbers were almost the same. Nick's were quite different. They can also measure mass. Whether it be the cheek, or a breast needing reconstruction.

They also take the CT scan, and meld it with their picture. Then they can move things, and it will tell them all the soft and hard tissue that will be affected if they were to move it that far. For instance, a Jaw extraction. They can map out ahead of time, how far to move it, and know how far is too far. Again, I could see this would have maybe helped Jack. We didn't know until he was IN surgery, that he couldn't have the full lip repair. With this system, maybe they would have know ahead of time. Of course it's all hindsight, and we'll never know, but they can also measure for appliances. They use it for helmets all the time. Jack had to have two molds done. This would eliminate having to take a mold!

ANYWAY...sorry to go off about the 3D MD. It was just so cool! I hope I can be instrumental in getting one in Utah!

Ronald Strauss was one of the presenters, and I believe, we were meant to meet. He and I are going to change the world. Ok, I'm dreaming big, but...HE WANTS TO HEAR MY STORY!!! Our prenatal story. He headed up a discussion, entitled, "Early Starts: Implications of Prenatal Diagnosis for the Care of Craniofacial Conditions." Um, do you think I had anything to say!? maybe a little. We talked after, and he asked me if I was a writer. I told him a little about this here blog, and we exchanged contact info! I'm so excited to have found the person who will help me. I feel like I have won Miss America, and I can talk about my platform!

DON'T TERMINATE BASED ON PRENATAL FINDINGS!!!

I look at Jack now, and can't believe I even considered listening to them. I was just trying to find in the old blog, where I talked about it, and got sucked in. Wow. It's kind of hard to read it, and kind of therapeutic! Weird...

Let's see...what else...OH...

"Hey, Where did our life go? Nurturing a Family Life and A Couple's Connection: A Field Guide to Life After Crisis." Anyone think this one applies to me and Steve?? Ya know, I have to say, the biggest thing we got out of this class, was that we are NORMAL!! Everybody feels this way.

They was a workshop on Dental care with a cleft, and a Parents Guide to bullying. You know, how to make a kid feel REALLY bad! NO... it was GREAT and the teacher was great too!!

There were 2 key note speakers. The first day was Dr Strauss talking about social stigmas, with facial anomalies, and how to help kids with them. Then he showed us a little bit of a study they are doing with teens, and how they handle comments, and stares. They had the same situation, and then changed how the kids handled them. THAT was awesome. It's all in how you react. You can get mad, and offended, or make it an opportunity to educate!

The second day was Cindi Broaddus. Here is an interview with Larry King. She was so neat. Sorry to use that word, but she just was. She has such a great attitude, and outlook on life. Enjoy reading about her!

Tuesday, I had been planning on going home after lunch. We had to drive straight home, and it is 7 hours with no stopping. I told the head of the conference we were leaving, said good bye to a few other people, and the kids BEGGED to stay! *sigh* The last 2 classes were about fighting insurance companies, and then a medical panel answered a lot of questions! Both were great! The kids had fun playing with the Child life specialists, and learning about hospital stuff. They got SO MUCH FUN STUFF! Stuffed animals, hospital stuff, all kinds of things.

Then they had an ice cream social. YUM! The Disney Store had donated a Plush toy for every child at the conference. And we got a gift bag for the family! WOW! This was full to the brim! It had craft stuff, and toys, and dental floss, and toothpaste, and toothbrushes! We joked we'd need a u haul to get all of it home! I'm so glad we stayed. We got to say proper good byes. We headed out of Vegas at 6:00 pm. UGH! We only stopped once! Believe it or not! We had dinner in St. George, and drove straight home from there! The kids slept most of the way, and we got home around 2:30 am. YUCK! Jack unfortunately, was wide awake. But finally went back to sleep around 3 ish.

I'm still sick to my stomach about my pictures. Maybe they will be saved, but I don't have high hopes. I know lots of other people took many, and I've put out a plea for them to share with me!

As I told you before, we didn't get to do anything touristy. We were not only low on funds, but time. The conference kept us busy, and then we were pooped out at night. I did take the boys down the strip Sunday night. And Parker fell asleep! *rolling eyes* It was just as well, all the naked butts on the cabs, are hard to avoid driving down the strip! UGH... there are half naked women EVERYWHERE!!!

So sorry about my mood last time I posted. But I hope you enjoyed my recap of the conference!

4 comments:

Fowler family said...

Jenny I am so glad you wrote all this down. It sounds like the conference was just fascinating. I really hope we can go one of these years. I am so sorry about the pictures. I hope people send you some.

And you should post a link of your blog entry to cleft advocate and the utah group. I think all of those who missed the conference would love to read these notes. -Anna

nickparkemjamom said...

Anna, First of all, thanks for reading the whole thing!! :)

I was gonna send the link and forgot!! Thanks for reminding me!!

You have to come next year! YOU need to be a Pathfinder!!

Sis Sarah said...

Where Wes got his helmet they have something similar to that 3D thing.

It was like a big scanner, he even wore the same little nylon on his head.

It could give you exact measurements of his head, So they could see where he was most asymmetrical and try to even him out with his helmet.

Lisa M. said...

Loved, the report, and yes, it is about time!

Love the new look too!

Hilarious that he fell asleep, looking at the lights.

It's not the same as it used to be though, now the flashy, blinking lights have been absorbed .. into bigger and better, more expensive attractions.

I was sad to see the Stardust gone. I loved their signs and lights, and also the Flamingo.

It's sad to me, how much Vegas has changed.

Is your lap top not functioning at all?

Goodness-

Great post. Glad you enjoyed the conference, and glad for the kiddo's to have fun.