Leo's beautiful smile and a week full of fun !

This is a long overdue post. Sometimes the hardest things to write or to say do not get posted. Or even talked about. But it is important for us to share this with you all.

As you all know, SMA affects Leo’s muscles. Without the protein from the SMN1 gene these muscles weaken and atrophy. These muscles include the facial muscles that give us the ability to make different expressions, to smile. You may have noticed that Leo’s smile has changed a great deal in one year. I hate SMA so much for this. It hurts so much. SMA has taken so much from him, but this, this is really hard. His big cheesy smile is not the same. He works so hard with his therapy and his z-vibe, but nothing can stop SMA.

His smile is still there, and it is as beautiful as ever.  Sometimes it is with his eyes, but he still smiles. It is just different. He is happy, and he is having a great time. Just because he can’t physically express the smile he once had, does not mean he isn’t filled with joy.

He has had an amazing past week. He went to Edventure, and he loved it! There is so much he can do there! We also decided to go down to Beaufort for a few days. We all had such a great time. We went on the dock, walked around downtown and even went out to dinner. It was a much needed family get away. Leo did great traveling, and he made everything as easy on me as he possibly could. Wyatt was very well behaved, and spent the whole ride as close to Leo as he could get. We returned home for a fun weekend with boat rides, sunsets and a trip to the zoo. He is smiling in most of these pictures. It is easy for us to see, but wanted to make sure you all could see it too.

 

Thank you so much for all your prayers and support for our sweet boy.

Also, 1 week left to get your tshirts!!!

New t-shirts are now available!! Help us fund research for SMA, spread awareness of this disease and share the message to Love Every One! We are in the process of getting Leo's Pride foundation set up, and decided Love Every One was a great tagline and play on Leo's name to represent the initiatives his foundation will take on.

We are so excited to offer more options this year, including a choice between two colors for a super soft comfy tee, a uni-sex performance tee, a ladies performance tank and...a youth tee!!

Get your tshirt to kick off the Go Leo Go fundraising event!

Money will go directly to Crossover Athletics, a non-for profit tax exempt foundation that is helping us again this year. All funds will be directed towards the overall fundraising campaign for Go Leo Go.

Go Leo and Go Love Every One !

https://www.booster.com/leospride

Using Essential Oils

As many of you know, our family has been using essential oils as part of our everyday health routine. I have become a huge advocate for the use of essential oils. They have benefited myself, Adam and Leo in many different ways. So after lots of thought and prayer, I have decided (with Adam’s help) to become a Wellness Advocate for _ essential oils! I am doing this because I believe in their products. After leaving my job as a physical therapist, I am also excited to once again have a financial contribution to my family without taking away from Leo. This is something I never thought I would do, and I am definitely stepping out of my comfort zone in doing so. BUT we really fell in love with these products, and I really just want to share information to anyone interested!

It began when an old friend of Adam’s and his wife came by and donated a very generous amount of various essential oils that they thought could help us and Leo. I have always been interested in oils, but had not really been exposed to them outside of them being diffused during a yoga class, acupuncture or a massage.  It never crossed my mind to bring them into our home. What would I do with them? I believe natural remedies are underused, but I still considered myself a huge skeptic. Basically I eased in to using them with hand soaps and cleaning products, and Adam and I began using them. After doing some more studying and research, I began using them more purposefully, and started using them with Leo.  Because of his inability to clear secretions and dependency on medical equipment, Leo is susceptible to certain bugs. We really have to be very selective when it is time to treat with an antibiotic. We know bodies can become resistant to antibiotics, and because these could save his life during illness, we do not want to overuse them. An illness can also be life threatening, so we want to protect him as much as possible. This includes protecting ourselves and those around him. Overall we have found the oils to be extremely beneficial to ALL of us for different uses and reasons.

I am not promoting miracle drugs, or claiming they are the cure all. I am still a firm believer in medicine. I wish there were more FDA approved drugs!(Like SMA!)  We are ready and willing to inject Leo with a man made gene when it becomes available! Or any other treatment that could help him fight his disease! I would also never hesitate for any of us to get on any medicine we might need so we can keep as healthy of an environment as possible. (Not to mention Adam is a Drug Rep) BUT there has been a TON of research lately in this area that has shown just how effective these oils are. There is a reason people are going crazy over oils. I am doing this because I believe these oils can help others. These particular oils are 100% pure and natural essential oils that go through a rigorous testing process to ensure potency, purity and consistency. (The testing process is actually quite interesting) The oils contain no fillers or artificial ingredients. I would not use any other oils with Leo. Essential oils have helped with mental, emotional and physical wellbeing. From single oils such as Frankincense and Lavender, to special blends like Deep Blue and Focus, there are lots of products to help with a wide range of needs.  We also offer hair and skin care products and supplements. I love Aromatouch and use this daily for Leo’s stretching and therapy. I also use lavender, a protective blend, oregano and melaleuca to name a few with him. I love to diffuse them for various reasons.
 
I also take their supplements and add different oils to my water.

These are just a few examples. Again, I am not promoting a miracle drug, but they have helped us, they are not harmful and they are just really nice to use! And a side note: I get headaches from candles, air fresheners and other like products, but not these. Again, they are just pure essential oils.

I will not constantly bombard your newsfeed with promotions of my new undertaking, but I am available for any questions or interests you may have.  I am going to start teaching classes on the use of oils. I can also talk you through things or through email or whatever works. If you or someone you know are interested in learning more about essential oils either a class or other method, please let me know! Also, please forward and share with anyone you think might have interest!

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.