AMCSI Conference - July 9

I know it has been too long since I posted an update, and there is a ton that I need to update on, but I wanted to take a moment to write a post about the AMCSI Conference that we attended over the last few days.

Wow.

That's all I have to say. From the moment we walked in, I was encouraged. Seeing people of all ages and from all walks of life, with and without AMC, gathered together in one place was... Just so encouraging. We got there right in time to walk into the newcomers reception (literally, out of the car to the meeting room) and you immediately began asking for your scooter because after being in the car for so long you wanted to move. Then people started introducing themselves and you had a tons of claps and a loud YAYYYYY for each one of them.

Within 15 minutes, we had been introduced to 6 other families from Texas - including one who lives literally 10 miles away from is. In New Braunfels. Down our street. RIGHT THERE. Apparently, there used to be quite a large grouping of Texas families who met up fairly regularly around the state but that has fallen off some. There are a handful of families in the San Antonio area who are wanting to get things going again so YAY! 

The second day, we heard from an amazing young woman from Peru who has put together a series of videos and who speaks to AMCers about finding their own way of doing things "My Way". We also got to hear from a doctor who is HUGE on going as far and as long as possible with bracing on feet before opting for surgery, 1) because there is a higher chance of relapsing issues the younger you do surgery and 2) it causes more chronic pain issues later in life the more surgeries you have. Interesting tidbit: the foot starts developing in the first 4 weeks of being pregnant and is completely developed by 8 weeks. By the time most women find out they are pregnant, the foot is as developed as it is going to get until birth. Amazing.

I got to go to a volunteer meeting and will hopefully get plugged in to the conference planning committee and helping the Texas group get a few meet-ups off the ground! After that I went to a session that gave advice on three or four practical, realistic stress relief techniques while Daddy and Grandpa went to a session about DIY Equipment for therapy and exercising. 

There were special sessions for Moms, Dads and Grandparents that were lead as peer to peer discussion groups and I was able to connect with some more AMAZING moms about what's working, what's not, ideas to try, and just talk about our kids (because what mom doesn't like to do that?!?).

By far, the best session was on advocating for your child - SO much information, so many ideas and so many things to consider!!!

I think the biggest benefit to the conference was seeing all of the other families  and AMCers - it was a great reminder of how far we have come, how blessed we are with your doctors/therapists/nurses and all of the support we have at home. It will continue to be something we try to attend as often as we can just for the support and encouragement.

Thank you, thank you, thank you to everyone involved with AMCSI and to the conference planning team for all your hard work!

(Lexi and I with the Board of Directors for AMCSI)