Candle Lighting

We had an amazing day today with friends and family. Leo has become quite the lake lover, and he had a great time going on a boat ride and hanging out on the dock!

This evening we lit our candle in honor of SMA angels and warriors. There are many times we push aside the reality of what a diagnosis of SMA can mean. We choose not to think about this, and celebrate and live in the moment. Tonight we celebrate our warrior Leo, but also celebrate the lives of all the many other warriors and angels. Our hearts ache for the families that are going through such incredibly tough times after the loss of their child, tough times that we can only imagine do not end. We send our love to all of you.

We are so very blessed to have Leo. SMA is horrible, but Leo is as put today "an angel on earth". Leo and so many of these children have touched so many lives, and are changing the world. We are also reminded once again, how very blessed we are to be surrounded by love and support for us and Leo. Friends and family have reached out in so many ways along our journey. You all will never know what this means to us. 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!