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Sarah Halstead

You are here: Home | Family | HPE Conference Day 1 & 2

August 1, 2012 By Sarah Halstead

HPE Conference Day 1 & 2

Filed Under: Family, Special Needs Tagged With: cerebral palsy, Holoprosencephaly, hpe conference

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.

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Comments

  1. Mindi says

    August 6, 2012 at 2:43 pm

    This sounds like an amazing time!!! I'm going to look up the conference. Would love to volunteer for something like this! So glad you were able to go, learn and connect. Wonderful pictures!
  2. emily says

    August 2, 2012 at 9:32 am

    It's really great that you had the opportunity to go to this conference. I'm sure you took in a lot. And, hopefully the people involved in that accident are okay, it's scary when you have to hit the road, you never know who else is behind the wheel...
  3. Serendipity is Sweet says

    August 1, 2012 at 10:03 pm

    Oh I'm so glad you got to experience the conference. It sounds like such an awesome support network. Your pics of Carsyn in music therapy are priceless! And that balloon release made me tear up. Wow. Yikes! On the scary drive. That would totally freak me out. Thank goodness you all were okay. I can't imagine what those other folks went through. How awful. Can't wait to read more ;)
  4. Kim Cuningham says

    August 1, 2012 at 2:23 pm

    So thankful for God's protection over you and the family, and for the opportunity to attend this conference. I just love the balloon release image. It gives you a lump in the throat thinking about it.
  5. WeeMason's Mom says

    August 1, 2012 at 12:58 pm

    The conference sounds really great! I can't wait to hear more about it. And that guitar smile? SOOOOOOOOOOO cute!!!
  6. Leslie Estes says

    August 1, 2012 at 10:48 am

    Love the balloon pictures!!
  7. Katherines Corner says

    August 1, 2012 at 8:01 am

    Wow, busy, busy, busy, fun! ( sorry about the accident though) thank you for sharing with us. It's like being there xo
    • Katherines Corner says

      August 1, 2012 at 8:07 am

      Wow, only half of my comment posted...sorry..I wrote- it's great that you were making happy memories with people sharing a similar experience. The balloon release is heart tugger. so sweet though.
  8. Marci says

    August 1, 2012 at 6:36 am

    What an amazing opportunity for you and your family! And to meet so many other people in similar situations, I bet that felt great. We got Seraphina a little play guitar from toys-r-us and she looooves it...you should get Carsyn one too since he loves music so much!
  9. Melanie says

    August 1, 2012 at 2:58 am

    I am SO glad you guys were not in that accident, hopefully the poor people that were are ok. Now onto this beautiful touching post... what an amazing even that looked like Sarah! You captured it all so well, LOVE the shot w/ all the families that intended. The balloons were so touching & beautiful!

Welcome

I'm Sarah and I am the writer behind this blog. I love sharing recipes, DIY projects, photos and about my everyday life. I married my high school sweetheart Kenny. We have three boys and one baby girl - Dustyn, Carsyn, Prestyn, and Annelyn. Thanks for stopping by, can't wait to get to know you more. Read More…

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