Monday, June 29, 2015

Cure SMA Conference - Day 2

Day 2

We started our first full day of the conference bright and early. For those that don't know, Steele's morning routine is anything but quick and our first session started at 9. Cure SMA does a great job with the sessions they offer. Actually, they do a great job with every aspect of the conference, but I really have to brag on their children's room. This is the room that the kids get to go hang out in while the parents attend sessions. This room is full of volunteers to watch the kids, every toy you can imagine, games, movies, video games...its wonderful. So wonderful, in fact, that Steele did not shed a single tear when I left! I really didn't know how he would handle it being that he was in a brand new place with brand new people. I shouldn't have been surprised that he was so excited to go play, but I was.

We knew Steele was in good hands and we were excited to attend the conference sessions. A quick bit about SMA- According to,"There are four primary types of SMA:  Type I, II, III, and IV. The "type" depends on the age of onset and the highest physical milestone achieved." Type I is the most severe, then type II, and so on. Steele was diagnosed with SMA type II.

The conference has "general sessions" for everyone to meet together and then they break out into "workshops" that you can choose between depending on your needs or the information you are seeking. Our first workshop was Type II Talk It Out. I love this workshop. This year, two young women with SMA type II and their moms were the "speakers". I put that in quotes because its basically a Q & A session. They give very candid and honest answers and I always love hearing about SMA from the perspective of someone who is living every day with it. I also love hearing from the moms who have done this for far longer than I have. Its definitely encouraging.

 Much like last year, Beau and I went into this conference with a few goals we hoped to achieve. One of those goals was to get as much information as we could about a power chair. As you know, Steele has had his manual chair for about a year and a half now and although he still uses it we have come to a place where we need power. He fatigues if he has to push himself for too long, and if he isn't on a smooth surface he isn't able to push far-if at all. Any situation where Steele has to go "off road" like at a park or something similar, he loses his independence.  Anyway, I sat in that session and listened to several other parent and family questions before I gained the courage to ask the girls what they preferred in a power chair (public speaking isn't really my thing). And wow! I got the best answer and advice!! I was feeling excited when we left the session and ready to dig deeper into getting a power chair when we got home from the conference. More on the power chair in a moment...

The other session I attended that day was about Standing, Walking, and Mobility. Basically we learned about bracing options (which thankfully Steele already has), how much and how long he should he stand if he is able (again, he is right on track with this!), and different equipment options that can help. More information on power chairs was also provided in this workshop! Last year at the conference I remember feeling like we had a laundry list of things we needed to do when we left conference- getting our hands on medical machines, equipment, etc. and this year I felt like we were on track with so much of what we were doing! And for that I am grateful to Cure SMA and the conferences they put on, the SMA support groups we are apart of on facebook, and our PT and ATP!!

So the sessions were over and we had some free time before the research poster session (the researchers come and explain their current projects-very cool!) and the dance party. We picked Steele up and went to look at the power chairs that a few of the vendors had with them. Our ATP came with us to help us and we talked to the reps. Here is where things get interesting. The rep there let Steele take a seat in the power chair to test it out (see Steele's Facebook page for the video). He did a fantastic job!! He knew how to push the joystick to go where he wanted to go, turn, and even back up. The rep there then suggested "Why don't you just take the chair for the night and return it in the morning?" I think my response was, "What, are you serious?" Having a two year old in a power chair Just. Got. Real. When he was "testing out" the power chair he was in a big open room! Now he was going to take this 300 pound machine it out into the masses of people at the conference?! To the dance party?! I would be lying to you if I said I wasn't full of anxiety.

It was time for us to eat dinner before the research poster session and dance party. Getting into the elevator I think Steele ran over Beau's toe and his PT's entire foot! I have to hand it to him, he did great...for a beginner! When we went to dinner it was the first time that Steele could elevate his chair and sit at the same height as everyone else at the table without a high chair. Later, he took the chair to wash his hands. It was the first time I had both of my hands free to help him get the soap and towels rather than hang on to him with one of my arms while balancing him on one of my legs. He was independently (and quickly) mobile! It was great to see his face while he operated that power chair. A moment I won't soon forget.

Our last stop of the day was the dance party. For those that know Steele, need I say more? That kid had a blast and wore myself and his daddy out! He wanted to party all night!  What a fun, and memorable second day we had. We gained very useful information, met some more amazing "family", and witnessed another one of Steele's "firsts". We were filled with JOY.  

A few pictures from day 2
Steele playing at the Dinosaur table in the children's room

Testing out the power chair in the BIG, OPEN room

Sitting at the dinner table in the power chair

Dance Party!!!!

Dancing with Daddy

Cure SMA photo booth

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