Alright I am going to try and blog everything we did at the conference. Hopefully I won’t leave anything out. I will break it up into two parts so the posts aren’t too long. I do have to tell you that I am very thankful for God’s protection on the way to the conference on Sunday. We were driving down 85 (which is a 70mph highway and we were probably going about 75-80) and this van kept making all the same moves that we made. We would switch a lane, then he would switch a lane. Going that fast he was following a little too close for my comfort. Anyways we were driving in the left hand lane when suddenly the van behind us crossed two lanes to the right and smacked right into another vehicle. They both went flying into the woods and back across the road. I couldn’t watch, ever since my accident I am very freaked out about them. We were in front and did not have enough time or place to stop, the cars behind the accident did stop. I am not sure what happened to the people but I prayed immediatly that they were safe. Kenny and I both felt the need to pull over and take a break. We were both pretty shaken up. I felt like I was going to throw up.
Anyways after we spent some time off the road we got back on the road and still made it to the conference on time. We had dinner from Sticky Fingers, played some get to know you games, listened to Josh Timmerman the racecar driver that helps spread awareness for HPE and Lesley the founder of Families for HoPE.
Then we had a balloon release for all the angels that are no longer here on Earth because of HPE. So sad, and touching.
Love the last one of Carsyn watching the balloons. Such a sweet moment with Daddy. That was then end of Day 1 which was actually just dinner and getting to know one another.
Here are all the families that attended the conference.
Day 2 we actually got into groups to start learning about different physical therapy, music therapy, etc. There were several different groups and things going on so I had to pick wisely which ones to choose. The boys got to go to kids camp while we did the sessions. Dustyn had a blast. I think Carsyn liked it but he did get fussy at times. Probably just because he was in a new environment and was really tired.
We first watched a movie about the program MOVE. Which stands for Mobility Opportunities Via Education. Basically it was all about how much better kids did in school when they were up out of their wheelchair in standing devices. How the teachers would change their position throughout the day instead of just leaving the kids in their wheelchair all day. It was an awesome movie and very inspirational. I teared up a few times.
Then we went to Gastrointestinal Issues group. I learned a lot of great things that will help Carsyn out. It was great hearing from other families dealing with the same issues we have with Carsyn.
Then we had lunch from ChickfilA and had a great time talking and meeting more families. This doctor, I can not remember his name, talked about all the statistics while we ate lunch. Like how long children with HPE usually live, how likely it is to have two kids with HPE, etc.
Then after lunch we learned some ideas to help Carsyn with his fine motor skills. I didn’t really learn any new ideas but it was great to listen.
Next was Music Therapy. I think this was Carsyn’s favorite part. He loved playing the therapists guitar. Seriously I was bawling because of his smile. It was so freaking adorable!!
Then we picked up the box dinners from McAllister’s. Yummy! Then headed over to the hotel pool for some water therapy. Carsyn loves the water. We didn’t get to spend much time with the therapist since there were so many kids but she did show me a few things I could do with him.
That is the end of Day 2. Come back tomorrow for Day 3 & 4. Phew! I haven’t written this much on my blog in a long time.