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.

A day in the life of an SMA warrior

A day with SMA is very different than a day in a life without SMA. BUT it is also very similar!

Leo and I start our morning whenever he decides it is time to get up. This is usually around 7. Adam or I set up his iPad with Mickey Mouse and then begin his breathing treatment. This consists of manual CPT (chest physiotherapy) where we pat over all lobes of his lungs with a special mask. This helps break up any “junk” that might have accumulated overnight. We put him on an incline so gravity can assist with the drainage of the “junk” and run a nebulizer with saline to help thin things out. After about 25 minutes of CPT, we cough him. This involves uses a special machine that simulates a cough. Leo’s muscles are not strong enough to perform a productive cough. Thankfully, we have this machine that is able to force air in and out of his lungs and airway to pull the junk up. It is a process of cough, suction, cough, suction…rotate repeat basically until everything is up. We then do very typical toddler things! I wash his face, brush his hair and get cleaned up and changed for the day. I also change his linens, give meds, do eye care and oral care and apply daily oils.

We then migrate downstairs where Leo hangs out and watches a little Disney while I change his feeding bags and get a new feed set ready for the day. I then massage his legs and arms followed with stretching. This all takes at least an hour and a half. We then typically load up for an adventure, usually the park or zoo or another fun activity, or he has therapy and then we go out. It is usually close to or past naptime when we get home and I will take him upstairs for nap. He usually rests very well. He at least has two hours of being on his bipap whether he is sleeping or just resting. We usually spend afternoons at home walking down the driveway, watching the chickens or playing and working (on sitting up ect ) inside.

Bedtime routine is also about an hour and half or more and consists of another breathing treatment, bath, bedtime stories and prayers.

Adam and I are usually a good team and alternate morning and evening treatments around what the other person needs to get done.

On Fridays, Leo has therapy mid-morning and usually a busy weekend ahead, and we often spend the mornings at home. Today we walked the driveway, hung out with the chickens and played on the porch. Leo then worked very hard during physical therapy and also had a visit from his HME to check his respiratory equipment. I snuggled with him on the couch for a little bit before taking him up for his nap. Once Adam got home we all went to the grocery store and hung out the porch before going to bed.

We do have to spend a lot of extra time doing things that aren’t “fun”. Just going up and down the stairs, moving equipment transferring and getting set up takes a good bit of time. But we try our very hardest to make everything fun for Leo and to get everything we can out of every moment. Typical or atypical, it is our life, and it is so very normal to us. We are so very thankful for our typical days, because we never know what is around the corner.

Oil'n for Energy !

I have been wanting to share a little more info for those of you that have expressed interest on how we use oils. Since using these oils and products, I have discovered new energy levels that make my days that much more fulfilling. As I am sure many of you can relate, sleep is not always the priority. And even when it is, that doesn't mean you will get the sleep you need!


A good night for me is 3 consecutive hours of sleeps. Thankfully, "typically" Leo will go back to sleep fairly well on his own after repositioning, suctioning, or doing whatever he needs. I am so grateful that I usually fall back asleep as well! (another post on oils and sleep will have to come!) Eating well, and exercise are a must for energy. For me, a nap typically makes me more tired. I gain much more emotionally and physically from using that time doing something active, but sometimes that is not an option, and I was still feeling fatigued. Enter essential oils and supplements!

I started drinking a metabolic blend of essential oils that includes grapefruit, cinnamon, lemon, ginger and peppermint. I drink this first thing in the morning. I also started drinking more water and adding a drop or two of lemon with every glass. Doing this alone I began to notice a difference. I had much more consistent energy.

I love to add a few drops of peppermint and wild orange in the shower in the mornings. I just let it get a little steamy and then pour the drops on the floor. It is so refreshing and uplifting! I also love to diffuse oils. I use the time while Leo is napping to try to get a few things done around the house, making phone calls regarding Leo, and I also inevitably end up on the computer working on something.  The computer drains me. Phone calls with the insurance company are also draining and can push making one to go into hysterics, but they are necessary. Things like this could really negatively impact my day if I let it. So I began to diffuse different oils while I am trying to get things done. It is amazing the difference this makes. It makes me feel productive, not drained! I love citrus oils, orange, lemon and citrus bliss are a few of my favorites. I also love to add a little peppermint sometimes.

I love to keep peppermint on me at all times now. I will place a few drops under my tongue, add a little topically or inhale the aroma. It is a great instant energy booster. A drop or two of peppermint and orange can go a long ways!

The next thing I added was taking supplements every day. I have never been great at taking supplements (besides the time I was pregnant with Leo). I would try to "commit" to taking something and would never really became a part of my daily routine. The oil kit I purchased included their supplement pack which happens to be their best seller. Among many things they contain some of natures most powerful antioxidants and 9 different essential oils, Frankincense, thyme, cumin, orange, peppermint, German chamomile and clove.


I was really excited about trying the supplements and it quickly became a part of my routine. Now I was really seeing a difference. I used to drink 2-3 cups of coffee a day. Two in the morning and 1 in the afternoon. I was never "trying" to cut back on coffee, but one day realized I am only drinking one cup in the morning (which I will never give up). I am not saying drinking coffee is bad, it is just nice to not even have the thought "I need some coffee". I also still have may days when I want my coffee, but in general, caffeine in the afternoon is not a must or even a thought.

I am forever the skeptic, and a huge believer in the power of the placebo effect, so I am constantly running my own little "trials" with new products. I ran out of my supplements, and decided I would wait a week before I decided if I would make them a part of my next order. Well oh my goodness, I should not have done that. I could tell immediately. This is actually what inspired this post. I could not believe the impact these supplements had made on my days! I really just felt like I needed to share this because I know so many of us could us a little more energy.

Another very important part of knowing and balancing my energy levels I have learned from Leo. He works so very hard every single day. At times, he doesn't have the strength and energy to catch his breath, and has to be put on his vent. Energy for him is limited. This has taught me to view my energy the same way. It helps me not waste my energy on things that really don't matter. There is just
no point it doing that! No one benefits.

Now, if we can only have more hours in the day! They are filled with joy, and they
go by way too fast.

Train with Leo !

Leo has been getting very excited for GO LEO GO and his party! We hope everyone enjoys watching Leo do some of his training for Oct 31!

https://youtu.be/H2cFp2cDUP4

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!