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

Saturday, June 27, 2015

Cure SMA Conference 2015 - Day 1

Wow! I just had to start this post with that word. "WOW" pretty much describes our week in Kansas City, Missouri perfectly. We had an amazing time with our SMA family. I think it would be best to break up our posts into days 1, 2, and 3 of the conference just to limit the length of each post. There is so much to say about each day. So let's get started!

Day 1
We decided that we would drive to the conference this year, so after a 9 hour trek we were pretty excited to pull into the hotel. When we pulled up we noticed that almost the entire line of vehicles were wheelchair accessible. If there was any doubt that we were in the right place that pretty much eliminated it. The hotel was absolutely beautiful. You walk in and hear the sound of falling water. On the second level of the lobby area was a beautiful waterfall. It didn't take Steele long to spot it, and he wanted to make a beeline right to it. When we went to check in we were informed that due to the heavy traffic of people leaving from the night before and all of the people coming in for the conference our room was not quite ready. At the time it seemed a little frustrating because we happened to arrive right smack in the middle of Steele's nap time and I knew he needed to get his rest in order to enjoy the rest of the evenings activities. Looking back, however, I am thankful for that delay because it led to more networking with other families that were in the hotel for the same reason we were. Steele had a blast meeting other kids in chairs and showing off his fancy tricks (which is mostly spinning in a circle). I will talk more about this later, but the feeling in the room was just positive and upbeat. I came to find out later that it had nothing to do with the hotel, and everything to do with the people that traveled far and wide to be there.

So a couple hours later we got a room and let Steele rest for his big "meet and greet" night. When he woke up we got him ready and went to Fritz's for dinner. Fritz's is a really cute train restaurant. You order your food from a phone at your table and a train that runs on a track around the room delivers your food. For those that don't know a few of Steele's favorite things are Buzz Lightyear, dinosaurs, and trains. He was elated to be eating dinner there.

At the restaurant we met up with Steele's physical therapist and his ATP (assistive technology provider) who also attended the conference. Folks I could go on and on about this. The fact that they took time out of their schedules, and spent their own money to attend this conference so that they could learn more about SMA in order to serve not only Steele but other clients they may currently have or encounter in their future is INCREDIBLE. You don't run across people like that everyday. They always go above and beyond.. and I don't believe that is special treatment we are getting from them.. its for all of their clients. Again, INCREDIBLE. We are so grateful for them.

So with full tummies and excited mindsets we went to the meet and greet and family fun fest. In the middle of the room a track was outlined on the floor. That is where they held the wheel chair race. This is something they do every year. Its where the doctors and researchers that are working hard to find a cure meet up with the people affected with SMA and race. I love this because the researchers get to meet and see the people they are working to help. To me, it makes it more personal. Its not just an experiment with mice in a lab. They are working to change the lives of so many that are affected with this disease that just robs and takes. I appreciate the work they are doing. I pray that their hard work pays off in the form of a treatment or cure soon. As of now, there are no treatments or cures for SMA. This year alone, over 70 people have lost their lives to SMA. Please join me in praying over the researchers who are working tirelessly to find that treatment or cure. And also pray for the families that have lost a loved one already. Its hard. Really hard. But when you can get together with others that are fighting the same fight and link arms and support one another it gives you a renewed sense of strength and hope. Its refreshing. Its motivating.

Around the rest of the room are carnival-type games. Volunteers are at each station and the kids can go play a game and win a prize. Many of the games involve throwing an item at another item-another thing that's high up there on Steele's priority list. So Steele made his rounds at the game stations and we had time to network with other families. Some were families we met at last years conference. Some were people we had only "met" via facebook support groups, but they all felt like family. It was a great start to our second SMA conference.

Here are a few pictures from day one!

Yay!! We made it!

Waterfall in hotel

Waiting for the train to pass at Fritz's Restaurant

Family Fun Fest

Wednesday, June 17, 2015

Post Surgery Update

Well, it has been just over two weeks since Steele's surgery and we are happy to report that he is recovering very quickly!! We would definitely call the surgery a success in that there were no complications, Steele hasn't lost much strength during his time "off" from therapy, and he is eating normally!! We are so thankful to have this major step behind us especially because we are leaving for the annual SMA conference TODAY!!!

This year the conference will be in Kansas City, Missouri. It is hard to believe that it has already been a year since the last SMA conference. As we have been preparing to leave I can't help but to compare my emotions this year to the emotions I was feeling last year at this very time. I have mentioned this before, but last year about this time I was second guessing the trip. I was anxious, scared, sad, and a host of other emotions-all which seemed to hit me at the same time. This year I am anxious but for a completely different reason. I can't wait to go see the people that have become our SMA family. I can't wait to go be with others that just "get" us because they are going through such similar situations. I am excited to laugh together, to cry together, and to learn together.

Be sure to like Steele's Facebook page as we will post pictures and updates throughout the conference. We are so excited to share this experience with you.

As always thank you for your prayers and support!!