EYL Camp - July 10

I've been working on this post for a few days now and trying to het things finished enough to be posted, but in between EYL Camp in Kerrville and now, we went to Tulsa for the AMCSI Conference and then I flew to Texarkana for EYL Round 2 so it took a bit longer than I thought it would.

You were so much more comfortable at camp this year - you really opened up and talked to so many more people! You had a great time with Nanny and LOVED helping her drive her chair. You got pretty good at it by the end of the week, but still haven't grasped the concept of holding the controller down to keep it going. Nanny said you had some pretty jerky rides a few times!

You actually ate really well this year at camp - which is usually not the case when we're away from home! You had a blast going to the dining hall every day and helping Mama count as the participants came in, giving high fives and waving and clapping to everyone.

The biggest part of the week for us this year was June 30 - Arthrogryposis Awareness Day. We were given the chance to share our family's story and present some information about AMC and how it has effected our lives. 

The participants were given the opportunity to donate money to AMCSI as part of the Big Give activity (in the past we've collected school supplies, sports equipment for an after school program, etc.) In less than three hours, they collected almost $500 for us to bring with us to the AMCSI Conference in Tulsa! We are so blessed that there are so many people who love and support our family, and this was an amazing out pouring of their love!

We took a big group camp picture this year and got some great shots with the students holding their blue bracelets up high in support of AMC Awareness Day!

It was a great week and you definitely have some more friends and fans after those few days!

Shriner, Surgery and Singing - August 20

Surgery went AMAZINGLY well! The ENT said it was almost a "normal" procedure...which is saying a lot for Lexi! It was a long two and half days at the hospital, but we made it. We watched Bunny (Zootopia), ElsaAnna (Frozen) and Horton (Horton Hears a Who) at least three or four times each. Read every book. Played with every toy. But overall, it was a much better stay than last time.

Smiling and Happy while we wait

Getting ready to head back - not as happy after this...

Time to head home!

This is what your incision looked like the week after surgery:

And here it is now:

Another suggestion the developmental specialist had was to start helping you learn how to type now because it will likely be a huge communication tool for you. I searched and searched for a couple of weeks but all kids toys have all of the letters in ABC order. I FINALLY found something at Walmart that looks like a little keyboard and you have been challenged to figure out where the letters are at when they aren't in order!

They made some changes to your HKFOs (hip knee foot orthotic) at Shriners so that they are much lighter and it made a HUGE difference! You've been walking really well in your reverse walker these last few weeks instead of just standing and crying!

Working on the video from AMC Awareness day didn't happen in the waiting room. Got the slides in video mode, just have to find a time when everything around me is quiet for about 30 minutes (HAHAHAHA!) to record the voice portion. I'm going to go ahead and post the EYL post because I don't know when I'll get the video finished and that post was started at the end of June and has just been sitting in drafts since then.

Singing has become one of your favorite things - lately you love singing the B-I-B-L-E, Days of Creation, Elsa Song (Let it Go), Olaf Song (Summer) Itsy Bitsy Spider and Twinkle Twinkle Little Star. You love singing with us during worship and usually start saying "More sing songs" after each one ends.