Train with Leo !

16 weeks and 5 days until Go Leo Go! We loved seeing comments last year about people training for the Go Leo Go event so we thought it would be fun for Leo's Pride to train together! We are going to track Leo's milage and try to post every week how far he has gone! Whether running, walking or rolling, miles or steps, we would love to see everyone comment on how they are training! We also want to encourage those who won't be able to make it to the event to still participate.

Leo's First Race !

What a great weekend!! Leo ran a 4 miler, got to spend time with family and played in the pool!

Running in the Born in the U.S.A 4 miler was a pretty emotional triumph for me, but not for the distance, time or even finishing. I used to love running, and I would sign up for races here and there because I enjoyed running, the competition and supporting a good cause. After experiencing a miscarriage with our first pregnancy, I was advised to take it a little easier when pregnant with Leo. I knew when our baby arrived I would start running again and we would do races together. It was one of the “normal” fun things I had planned on us doing.

Then our world was turned upside down. So many things we had “planned” on doing were gone. But like these things, with time, we slowly found new ways to do them that fit Leo. Leo LOVES being outside and strolling through the park. He also loves when we are running! That is all the motivation I need! We signed up for the race, and Leo had a blast! He loved seeing all the other people running, and he would have kept on going! I am so proud of how great he did!

I would be lying if I said there are not moments where we have to say, Leo will not be able to do that. Sometimes for one reason or another, it is just not physically possible. SMA can be a debilitating monster at times. But crossing that finish line was a moment of “nothing will stop Leo”. Nothing in this world will ever hold him back.

We hope everyone had a July 4th great weekend !

Zoo Day with SMA Families !

Leo had such a great day yesterday! We were able to meet up with two of Leo's buddies that have SMA and their families at the zoo! It was such a great experience, and we had the BEST time. We have such amazing support, but there is just something about spending time with people that are living with SMA that does the heart good. I am so happy that that our families could get together, and we could have this experience !!

Go Leo Go set for October 31 !!

Leo was a pretty tired from a big meeting he had this afternoon!! We are so happy to announce that the Second Annual Go Leo Go will be on October 31! The 5k/1 mile Family Walk will be at Leo’s very favorite park, Saluda Shoals!! This park has beautiful trails that run down by the river, and will be the perfect place for his event and to celebrate him turning TWO years old !! More fun announcements and details to come.

Father's Day weekend

Thank you so much for all your prayers for Leo! We are happy to report he is doing well. He has had us worried here recently with a high heart rate and lower oxygen than his norm. He was obviously not feeling well, and he was working much harder to breathe, especially in the mornings. We pulled out a giant mucous plug and he has been feeling much better ever since. We had a great Father’s Day weekend last weekend full of celebrations, fishing and spending time with family. We did some very “normal” things this past week. Leo went to get an oil change in his van, went shopping and had several trips to the park! We had another great weekend together. We enjoyed some cooler weather today at the lake and watching some “chicken TV”! We also had a first trip on part of the Palmetto Trail across the river!

Sweet children

Leo has been doing very well! We are having to cut down on his outdoor time a little bit due to heat, but he has still been getting out a good bit. We just try to go early, and he is set up with cooling pads, cold packs, umbrella and fan. He had a great trip to the zoo last week with family, and is enjoying running down by the river at Saluda Shoals. He also likes going to the grocery store and running errands. We have run into some awesome prayer warriors the past few days that made a point to say hello to Leo!

This story in particular brought tears to my eyes. We were at Crooked Creek Park here in Chapin earlier this week and a large group of kids that must be in camp were walking on the trail. As Leo and I went by, we heard lots of little voices saying “Hey Leo! Hi Leo! Hey!” I said, y’all know Leo? And they said Yes! We know Leo! One boy said “I did his run!” They were so excited to see him! We were running by at the time so I didn’t get to see all the faces of who they were. After we passed, I stopped and asked Leo if he heard all those children cheering for him, he gave me the sweetest smile and yes blink, and then I lost it :)

Thank you so much to all the awesome parents out there that are sharing Leo’s story with their children. That are including them in prayer and teaching them that we are ALL different in different ways. But we are all the same and created exactly the way God intended. Thank you for teaching them to say hello! They will not forget this as they get older, and they will be just as loving as adults. We hope this will be the most well educated and all inclusive generation of time.

Thank you so much.

Lake and Chickens

Our little man has been doing great! He has had to be on several rounds of antibiotics for more bugs, but he has been doing wonderfully here recently. We pray that this round has taken care of this issue. Unfortunately what he has been fighting is common in kiddos with SMA.

Leo’s chickens arrived, and we are having so much fun watching them! We are still working on Wyatt’s relationship with them. This could take a while!

Leo has been doing great with using his Tobii EyeGaze device. He consistently tells us when he needs a suction, and he loves to talk about his pets (especially Wyatt) family, and things he likes to do. One thing he has done since he first started using the device is as soon as the computer loads and he is set up he will put a song on for some background music while he chats, explores and plays games. He will also often say “Mine” and “Don’t touch” if we try to change something on the screen.

He has had some great days floating in the pool, going for a boat ride and spending time with family. He also went to the movie theater for the first time! He was very impressed.

Thank you so much for all of your continued love and prayers. Please pray that Leo could remain illness free when he comes off of his antibiotic and that he continues to enjoy his summer.

Leo loves to pray at night and becomes very vocal as we build up to Amen!