AMC Awareness Day - Sept 14

AMC Awareness day is June 30 of each year. This year I had the unique opportunity to tell your story and share about AMC while we were at EYL Camp. In addition, the group took up a collection that we were able to take to the AMCSI Conference the very next week - what great timing!

You're probably asking, what does all of that stuff that happened in June / July have to do with a post in September? I've had several people ask me about the presentation I gave at camp and I FINALLY got it made into a video to be able to share with everyone! Building the presentation took quite a bit of mental (and emotional) effort - it was both amazing to look back at how far you've come and heart-breaking to look at how close we came to losing you a couple of times!

So here is that video:

Now for the fun part: you have made SO MUCH progress since June!!! Going back to the presentation just two short months later, it amazes me how out of date it already is!

We got your trach stoma closed in early August so we are completely through with that. Just yesterday we had a follow up with the ENT and she cleared you for aqua therapy - which is great because you LOVE the water!

She was pretty sad though because she is out of reasons to keep seeing you! She went ahead and scheduled one more check up in 6 months "just to make sure", but after that we are down one specialist! It's a bitter sweet thought because Dr. B has seen us through so much and has always been open and honest and direct with me about what's going on!

The clips in the video presentation show you slowly moving in your walker, but in the last two weeks it has finally clicked that you can go on your own and now YOU ARE GONE! You started chasing puppies at our family reunion over Labor Day and every day since then (with the exception of one or two) you have spent at least 25-30 minutes walking. We've gone from spending 30-45 minutes in your HKFOs to almost 3-4 hours straight - which the doctors at Shriners should be thrilled about. At the last visit they said they wanted us to work up to 7-8 hours a day and we almost laughed because we thought we were doing good to get the 45 minutes!!

My favorite walking experience in the last couple of weeks would have to be you walking into the NICU yesterday and getting to see your doctor, a few nurses, AND your PT, OT and ST all happened to be right there when you walked in. There might have been a few tears.

It is so hard to believe that we have only been home for two years now; but at the same time, every time we go back to visit it feels like a lifetime ago!

Most of our walking has been done outside - you've now mastered walking in grass, on sidewalks, going uphill and downhill, on asphalt and on dirt paths. Our neighbors have been pretty patient with us as we take up the entire sidewalk...and walk down the middle of the street sometimes.

Having family close by has given us a walking goal as well - the first week we were walking outside and you got it in your head to walk to Mimi and Papa's house (at the other end of the block). We made it across the cul-de-sac and past one more driveway before you gave up - but have asked a couple of times since then to walk there again! You've also really enjoyed taking your walker to Bible class and walking around the church building.

Slowly but surely making it to Mimi and Papa's house!

Took about 20 minutes, but she was determined!

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!

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)