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!

Leo Living

Spinal muscular atrophy is a horrible disease. It has stolen Leo's ability to sit up, walk, eat and even breathe on his own. It controls so many aspects of our lives with treatments, equipment and physical limitations. But it does not control our happiness. We are not getting by or just managing. We are living life, and we love it. I am so different from most mothers in so many ways. But our love for our children connects all of us. The hardest part of being a mother for me is no different than you. It is when our babies hurt and we can't fix it. I am so grateful for every single moment we have with Leo. But most importantly, I am grateful that he is comfortable, happy and that he loves his life. Happy Mother's Day to all of the moms, moms to be, angel moms and moms at heart.

Here is another attempt of me piecing together some video clips of Leo. We are so grateful he taught us how to live, and I am so very proud to his mom.

https://www.youtube.com/watch?v=PH9aAQVbgCg

Disney

Leo has been on the go again! He just returned home from going to Disney World!!! It was an amazing trip. He had a great time, and got to spend time with his cousins, aunts, uncles and grandparents. We are (of course) so proud of how well he did!

He was able to do so much in Disney! He went to Magic Kingdom, Animal Kingdom, Hollywood Studios and Epcot. He was actually able to ride several rides! Certain rides have special wheelchair accessible carts where he is able to be in his medical stroller. We had a feeling he would enjoy the rides, but had no idea how much he would LOVE them!! A few he could ride were Toy Story, Journey of the Little Mermaid, It's a Small World and Nemo and Friends. 

He saw several shows including Lion King. He was also able to ride in a wheelchair accessible jeep to go on the Safari in Animal Kingdom! He went to Downtown Disney and loved hearing live music, saw a fireworks show at Epcot and saw the Electrical lights parade at Magic Kingdom. He even met Mickey Mouse, and the cast of the Lion King show! He stayed in “Radiator Springs” in a Cars themed hotel that was so much fun. It was an amazing experience. There was so much for him to see. He is limited by his disease in so many ways, but at Disney it felt like he was involved in everything. The light in his eyes brought us so much joy.

Every Cast Member we came in contact with was very understanding and completely accommodating. We could not have imagined things would go as smoothly as they did. We could never say enough great things about this trip and what this trip meant to our family. We are so blessed and so thankful to have had this time.