We had a fantastic time at our first ever LPA regional event! With the event being held so close to home how could we miss it?! Just 30-40 minutes north of us our district came together for some great fun! I had no idea how large our district was! There was an estimated 200-250 LP's at this gathering! Wow!!!!
Being our first regional and first ever LPA event I didn't really know what to expect. We could only manage to make it for one day, Saturday, although the event went all weekend long. We signed up for the parents meeting, but ended up crashing in the kids room since the girls loved it sooo much in there! They made lots of fun crafts and got to socialize with all the other kids! I wish I had thought to take pictures in the kids room, because these kids were living it up! Hopefully our district site will have some posted soon and I'll provide a link when they do!
We also went to Dr. Bober's presentation which was very informative! I loved his discussion on growth plates. I knew most of this information prior since we deal with Sonya's bones all the time and fracturing along the growth plates is common for her, thus her short stature, but the refresher course is always great! He also discussed the new treatment coming out for Achons, but there wasn't any more knowledge on it than what you all know already. Trust me. Sonya was very excited to see Dr. Bober and couldn't wait to gain his attention to show off her new wheels! Jenn and Jason also got some good news from Dr. Bober! Head over to the Greene's Blog to read about it!
After the conference with Dr. Bober we headed out with the Greene's to The Crayola Factory to have some more fun!!!
Sonya loved the machines that accepted your tokens and popped out markers and crayons! 
Simon got to use scissors for the first time and LOVED it!
The girls had a great time creating too!
We got to see how crayons were made and wrapped with their labels! We all even got to try to label a crayon by ourselves! Sonya wanted to go into the factory area with the worker! She wheeled about trying to find an entrance!
How cool is this screen! The kids stand in front of it and make motions while the screen recognizes them and sketches their movements in cool colors! See Sonya's wheelchair?!
Unfortunately, this is where we really realized that Sonya has some extreme issues when it comes to transferring from one activity to another. She has a complete and utter meltdown every time we move from one exhibit/ activity to another even when she knows the next activity will be fun and exciting! Seriously, she would be content to sit and draw one project for hours! It's an incredible attention span for a child of her age to have but when there are a million things to see and do it seems to be sensory overload for her. Basically it has to be on her terms when it comes to moving on to the next activity. This makes it very difficult to go anywhere anymore. At this point she is learning that she can't control much of what happens to her body. The fractures, surgeries and treatments are all out of her control and she is trying to control all the other aspects of her life to feel secure. She even had a complete meltdown over turning off the light before bed time this week. She had already turned it off, her sisters turned it back on since they were still brushing their teeth and well, that was the last straw for Sonya. Cried herself to sleep that night even after she turned it off for the second time. Lot's of OI kids and other children with disabilities struggle with this control factor. It's just another aspect I wanted to share with you all so that you can understand that not only is she a typical 2 almost 3 year old with the attitude to go with it, but she also has this battle for control going on too.
Due to many meltdowns we had ended up painting for about an hour and separating from the Greene's. Sorry Jenn, Jason, Simon and Jude! Then she had another meltdown when we went to put the wet picture thought he special paint dryer and decided it was time to go.
It was a great day regardless of Sonya's upsets though! You'll have to visit the Greene's blog for some more pictures, especially for the kiss goodbye photo! I missed it! These two are so cute together!
It was a great day regardless of Sonya's upsets though! You'll have to visit the Greene's blog for some more pictures, especially for the kiss goodbye photo! I missed it! These two are so cute together!
2 comments:
Adorable pictures. I am sorry Sonya is going through some issues right now. Maybe you're right, she feels when she is doing an activity she can control it-she can't control the lightswitch etc. Actually when I was little there was a light I had that connected to the ceiling fan. This light had a remote so I could turn it on and off and control the fan. Maybe this could be good for Sonya? I think Hunter fans made the light.
It was so great to see you guys . . . always so much fun!! So happy you enjoyed your first ever LPA event and got to meet so many families! Simon loved seeing Sonya, as usual! The Crayola Factory was such a big hit, just wish the time didn't fly by so quickly! No worries about separating for a little while - just happy everyone was having fun!
I'm so sorry that Sonya is having control issues, but it is more than understandable! I couldn't imagine feeling like you have no control over what happens to your body and bones and how you never know for sure what the day holds for you, so it definitely makes sense to want to have some sort of control in life. I'm sure it really helps Sonya too that you don't let OI issues control your life.
Simon was really missing Sonya the next day and has really gotten used to seeing her so often! We are on a countdown until our next together!
Hugs!!
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