A letter to Leo's Pride

Once a private person, many have seen how Leo has transformed me into opening up in ways I never imagined. Revealing thoughts and emotions to all of you because you all have fallen in love with my son and surrounded us with a support network that gives us strength everyday.

Your love and support for our family has been unbelievable. Prayers, cards, meals, donations, parades, sharing Leo’s story, donor milk, your comments, gifts for Leo and so, so much more. Over 600 people registered last year for Leo’s race. Over $80,000 raised and double from an anonymous donor! Thank you will never be enough. Humbled doesn’t begin to describe the way we feel because of all you. We love reading and hearing your kinds words saying we are amazing, that we are an inspiration, but the very people saying these things, going out of their way to speak to us when they don’t even know us, and volunteering their time for us are the inspiration! You are listening and sharing and helping us change things for Leo and so many others.

And here I am! Horrible with thank you notes, hard to reach on the phone, and late to respond to texts, messages and emails. We are bad about RSVPs because we want to be there, but we just never know if it will work out. We sometimes struggle to make what seems like a simple plan, and we are very particular when we do make them. We miss birthdays and important events. We try to be as active as possible and give Leo every experience possible, but we still very much live in a bubble. It can feel selfish, because we are so deeply grateful for all of you and have trouble expressing our gratitude.

And we keep asking for more. And that can be very hard for us when we already feel so incredibly blessed by your support thus far. But the thing is, what I remind myself, this is for Leo. And children like Leo. We want to spread SMA awareness and change the stigmas and biases that can affect individuals with different abilities than you or I. We want to live life to the fullest, and never take a moment for granted. But ultimately we want to save Leo’s life. Because we choose not to think about the “what ifs” we can often be detoured from stating the obvious, and that is we need a cure for SMA. Statistics show most will not live past two years old. No one can put a timeline on Leo’s life, but it is a fact that SMA has significantly shortened his life expectancy. That is our reality, and things have to change for Leo and for other families going through what we go through every single day.

It is a natural reflection at the end of the day to spend time thinking if this was it, if Leo was not here tomorrow, would I be proud of the mother I was today? Could I live with myself if this was my last day with Leo? Writing this is difficult, because the thought process I go through is so natural and easy. I don’t dwell in the sadness, and I don’t let my mind drift to the darkness that life would be if this did happen. It is a simple self-reflection, and I try to make tomorrow better in whatever way I can. It occurred to me last night that perhaps I have not been as open about his inevitable shortened life. I have been trying to educate, and update, but I feel like I have been missing being the advocate I need to be for my son. Do you know that we save his life every day? Do you know that what starts as Leo just crying over something small can easily turn into him not being able to breathe and an emergency situation?

So here it is, after all you have done and continue to do, we still need you. We need all of you. You all know there is no cure for SMA. This does not really encompass the concept that there is NO treatment for SMA. There is NOTHING. We manage the progression with various interventions, we change diet, give supplements, have therapy and try to do everything we can but there is nothing available for Leo. We have learned a great deal about the ridiculous timelines that exist before a drug is available to the public. We have learned even more where the funding comes from for the labs and research that leads to treatment. It is from you. The groundwork and the development of ideas that could lead to trials, treatments and a cure, come from people like you. From large corporate donations, to the child emptying his piggy bank to pay his registration fee, every single donation and registration matters. So as his mother, being his advocate, I am asking you to please share Leo’s story. There are so many generous and loving people in this world that would to make a donation for something that could save lives, but just don’t know about SMA! Ask your company if they match donations. Do what you can, and challenge yourself to think how you can help raise money and include others in this event. Invite friends! Do a 5 weeks to a 5K challenge with your social group. Encourage the friend that suffered a stroke to come celebrate all the obstacles they have overcome. Bring the senior athlete that has worked hard their whole life to maintain the physical health they have. Tell every person at your next meeting or gathering about SMA and Leo, and what Love Every One means. Invite your neighbors! Do you have a special contact that comes to mind that might could help us? Do you have a place you could pass out flyers or place a poster about the event? Everything will help. And don’t forget to tell them how much fun this event will be!

SMA has stripped Leo of almost every physical ability. Down to his ability to breathe and smile, and now we fear it could start affecting the muscles that control his eye movements. We have to stop SMA, and we have to do it now.

Many ongoing thanks to all of you and thanks be to God for our very blessed life and this opportunity.

runhard.org/pages/race-leo.php

SMA Awareness: not just muscle weakness

A diagnosis of SMA means so much more than just “muscle weakness and wasting”. Aside from the feeding, swallowing and respiratory issues, there are many other issues that develop because of SMA. Many have orthopedic problems, GI dysfunction, and new research is being conducted regarding autonomic dysfunction in early onset SMA.

Orthopedic problems can also become a major issue for individuals with SMA. Issues vary with type of SMA. Individuals with type 1 can have limited range of motion and can develop contractures due to the inability to move joints within their normal range. They also have poor postural control and alignment because of their profound weakness. They often have progressive scoliosis and this can lead to the necessity for surgical correction. They are also at risk for hip dislocation, increased risk for pain, osteopenia and fractures. Proper postural support, orthotics/braces to prevent contractures, assistive and adaptive equipment and ongoing reassessment are very important.

Research is also currently being conducted to examine autonomic dysfunction in early onset SMA. Autonomic dysfunction is a broad term that refers to the autonomic control of basic bodily functions including heart rate, body temperature, breathing rate, digestion and other systems. It basically refers to the things that happen that you don’t have to think about. According to Dr. Bach, “about 20% of children with SMA type 1 and 2 have slowing of heart rate below 60 beats per minute. At times the slowing is to below 40 beats per minute and results in loss of consciousness.” He also explains that there have been several cases in which children have died suddenly because their heart rate drops to zero.

Most individuals with type 1 SMA are on special diets. While all children are different, and there is some variation, in general most do best on an amino acid diet. Unfortunately, because the research has not been conducted yet, many physicians and dietitians are reluctant and might refuse to right for this diet. It can often be yet another battle we as parents have to fight. And it is so important to do so!! This diet consists of an elemental formula that is easier to digest and has very little fat. Most parents using this particular diet have found their children to have slower/less progression of disease, fewer secretions, less constipation, improved respiratory health and overall improved. Too much fat can result in the baby working so hard to digest their food that they end up burning too many calories and actually struggle with weight gain. Many have found decreasing fat to less than “typically” recommended levels can result in healthy weight gain. Children do still need some fat in their diet. Breast milk is a well tolerated fat that provides calories and fat needed without added complications and side effects. Leo has been receiving donor mild for sometime. We are so thankful to have had friends, friends of friends and strangers reach out to provide Leo with this priceless gift. We have been running very low on milk, so I decided to post to a group on Facebook to see if their were any donors willing to donate to Leo. Once again we were blown away by the outpour of love and support shown to us and Leo. This has taken a stressor out of our lives. The thread is really something to read. So many moms coming together to help give Leo a gift than I can not. It brought tears to my eyes. We are so thankful.

Leo had a great weekend! We went to Charlotte to visit family. Leo loved the Whitewater center! He loved watching all the action and of course being outside! We also had a great trip to Freedom Park. Leo loved getting to play with his cousins and spend time with his family!

The Rock Behind the Scenes

Thank you so much for all of your kind comments, likes and shares of Leo’s interview! Even if we did not get to respond to every one, we read them all and they meant so much to us!

I was so very proud of how great Leo did. We were sad Adam couldn’t be there with us, but maybe next time! Being a parent to a child with SMA has many challenges, some are the same of any parent and others are unique to our situation. Being an SMA Dad is like no other. Adam is often, as described to me the other day, “the rock behind the scenes”.

He is the one that has had to leave Leo when he was not doing well. He is the one that has to be gone everyday to support our family and provide Leo with insurance. He can’t make all of Leo’s appointments, but wishes he could be there to hear all the details. He is sometimes left out of decisions regarding Leo, not because we don’t communicate, but because there simply isn’t enough time in the day to discuss everything that needs to be decided. He is the one that has to listen to me complain about my 90th call to insurance I had to make that day.

He is the one that has had sit through a phone call listening as I worked on Leo to get his oxygen and heart rate up. Called because it was taking so long, and if I couldn’t, if something happened, I wanted and needed him there.

When you are with Leo it is impossible to feel anything other than love, hope and joy. Busy yes, anticipating and prepared for scary scenarios, yes, but negative thoughts don’t stand a chance when you are with our sweet boy. I am so very blessed that I get to be with him all the time. The hard part is when you are away from him. We are so blessed to have our “rock” with a strength and faith that others might never see.

And Leo sure does love his Daddy!!

Leo's Interview!

Here is the link to the interview!We are so very proud of Leo! He did so great!

Thank you Jasmine Styles and wltx for helping share Leo's story! He had so much fun watching himself on TV!

http://www.wltx.com/…/technology-allows-boy-rare-…/32444529/

Go Leo Go Registration!

Leo is very excited to announce that registration for the 2015 Go Leo Go is now officially open!! It is October 31 at his favorite park, Saluda Shoals in Irmo, South Carolina. The 5k will begin at 8:30 am and will be followed by the 1 mile family walk and Lionheart Dash! We are so excited that this event will be for everyone! Whether you are a competitive runner, this is your first 5k or 1 mile walk, or you are a special and exceptional athlete, this will be an event for you! Last years winner came in just over 16 minutes, many ran their first 5k and more walked and rolled in the 1 mile! Wagons, strollers, wheelchairs, walkers ect. are welcome and encouraged!

Following the events we will have awards, and we will be celebrating Leo turning TWO years old! This is a huge milestone for our special boy and we are so very proud of him. Awards this year will also include a costume contest, so start thinking about your costume! We will have also have games and activities following!

When you register you will be able to select from three options 1) 5k runner 2) Walk or 3) the Lionheart Dash which is for exceptional and special athletes.

The website also has links for sponsorship, volunteer opportunities, and the option to make a donation if you are not able to participate. (All donations will be qualify as a tax write off)

The event will help raise awareness for SMA, fund research to find a Cure for SMA, support the medical equipment pool through cureSMA.org and fund the LEO grant.

We look forward to bringing everyone together in celebration of our unique abilities!!

https://www.runhard.org/pages/race-leo.php

SMA Awareness: Is there a cure for SMA?

NO. Currently there is no cure for SMA, BUT there are care options, and they can allow these babies and children to have wonderful lives!

I will never forget being told by a nurse that was taking care of Leo while we were in the hospital, “Don’t trach your baby. Then he will just be there. He won’t be able to do anything, and he will not have a good life.” I cannot express the anger I felt when hearing that. This was our baby, and we were going to do everything we possibly could to give Leo joy, happiness and an amazing life. (All of our other nurses were great and loved Leo)

Part of SMA awareness and sharing Leo’s story is to share our message to Love Every One. Part of this is understanding that we are making the decisions that we think are best for Leo. There are other care options, and we believe every parent is doing what is best for their child. They are all horrible decisions, and there is no right or wrong. We just hope and pray that parents will be educated about the specific care options. All too often we hear stories of little ones in critical condition being told they don’t have options all while receiving improper care that is completely against protocols that were established years ago for SMA. Below are the very basic care options.

1. Non-invasive Care- this includes chest physiotherapy, cough assist and BiPAP, feeding tube
2. Invasive Care- this includes a tracheostomy with ventilator support.
3. Palliative Care-this is when the parent would choose that the above options are not right for their child. It is often termed a “comfort care” approach in which alternative treatments such as oxygen and medication are used to keep the baby comfortable. The majority will not live past 1 year.

This does not mean that there aren’t gray areas and overlap, and it certainly doesn’t mean once one path is chosen you no longer have choices or options for another. We have had many difficult decisions to make. We are currently doing a non-invasive approach with Leo, but again, we believe that there are no wrong decisions. We pray that God will continue to guide us along his path he has chosen for us and Leo. We are doing everything in our power to give Leo the very best life. He is not just there, he is living and he loves his life!!

SMA Awareness: Respiratory

One common question we often get is if Leo uses oxygen, or if his BiPAP is giving him oxygen. Although we do carry an oxygen tank in case of an emergency, Leo does not get oxygen. SMA does not cause a problem with gas exchange in the lungs. Therefore, the blood is getting oxygenated as needed. What happens with SMA is the actual muscles that are used to take a breath are weakened to the point where breathing becomes very difficult. The muscles in between the ribs, the intercostal muscles, are weakened to the point that Leo uses his diaphragm to breathe.

A drop in oxygen levels can occur but it is typically due to 1) airway blockage by mucous or a plug which must be cleared using cough assist or suction 2) Leo becomes so fatigued to the point he can not physically take a breath (this can happen when he gets very upset) or 3) improper BiPAP settings or mask/interface. Unfortunately

we see all too often when these babies are being treated under physicians care that are not familiar with SMA, they are quick to put them on oxygen which only masks the underlying problem and can actually be very dangerous.

Most babies with type 1 SMA would benefit from breathing support at night starting at a very young age. When sleeping, the muscles used to breathe are more relaxed. When these muscles are already weakened, the breaths become very shallow. This can result in a drop in oxygen levels and an increase in carbon dioxide (hypoventilation). Non-invasive support using a BiPAP machine (or ventilator) can be extremely effective in helping provide support. This machine uses a mask that covers the nose, and provides additional respiratory support by forcing air into the lungs. This allows the baby/child to receive a higher volume of air, and also helps keep the lungs more expanded during exhalation. The vent has a set rate of breaths it gives in a minute and can also sense when Leo is taking a breath. So it gives breaths when Leo is having trouble taking them (or asleep), and helps give the breaths he does take on his own more support. A BiPAP can also be lifesaving during times of illness. We call it a BiPAP often but technically this is a ventilator (vent) used non-invasively as a BiPAP not a true BiPAP machine. We also sometimes call this “his mask” when referring to the vent.

When Leo is on his vent, he gets to rest. For the most part he only needs this while sleeping at night and during naps however, there are often times when he had to be put on his vent when awake for different reasons. He is usually on his vent when I am driving any further than our local park or on the interstate. If it is past naptime or if Leo is staying up late one night, we will also put him on it so he can rest. Leo is pretty laid back, but like any toddler he can get upset and have a tantrum. For Leo, this can spiral into serious situations if not handled quickly. He will clamp down and his heart rate and oxygen can drop rapidly, and he will need his vent to give him those breaths to recover. It is also helps him while sitting up or standing. Leo has always been a little fighter, and he will still fight being put on the vent when he does not want it or think he needs. For the most part though, it has become very comforting to him, and he enjoys being able to rest and breathe easy.

SMA Awareness: Types of SMA

We raised $3630 with the booster shirt fundraiser! You all continue to amaze us! We had no idea we would come anywhere close to selling 238 shirts and raising this much money! Thank you so much to everyone that purchased a shirt and made donations in honor of Leo. Please wear your shirt to continue to spread SMA awareness. The funds raised will be combined with funds from Go Leo Go.

As we are now going through the process of establishing Leo’s Pride as a foundation, we decided it was important to have a website with information about SMA, Leo and Leo’s Pride. Please visit leospride.org !

SMA Awareness: Did you know there are different types of SMA?

Type 1: Non sitters, never able to sit. Onset before 6 months, most commonly before 3 months. Children have hypotonia and decreased movement of arms and legs, swallowing and feeding difficulties, and impaired breathing. Prognosis is poor with 80% dying by age 1 with the majority of the rest by age 2 (without intervention). Sometimes the most severe cases of type 1 are termed type 0. These babies are born extremely weak and often only survive a few weeks after birth even with intensive respiratory support. 60% of individuals with SMA are type 1.

Type 2: Sitters, unable to walk or stand independently. Onset between 7-18 months. Legs tend to be weaker than arms. May have swallowing difficulties and difficulty with weight gain, weak intercostal muscles (for breathing). May have difficulty coughing and clearing tracheal secretions. 27% of individuals with SMA are type 2.

Type 3: Stand and walk. Onset >18 months and variable. They achieve independent ambulation. Some may lose this ability and childhood while others may maintain until adolescence or adulthood. Swallowing, cough and hypoventilation are less common but may occur.

Type 4: Walk. Onset is usually in the second or third decade of life with mild motor impairment

Types 3 and 4 combined make up ~12% of SMA cases. In general, walkers have relatively preserved pulmonary function until late into their disease course.

Leo stood up this morning!!

SMA Awareness: Pet Therapy, acceptance and love through the eyes of a dog.

It is hard to go back to the day we were given Leo’s diagnosis of SMA. Emotionally and mentally, it seems so long ago (21.5 months!). Terminal diagnosis, life saving equipment that we would need to become experts at using every day, medical ramp on the front steps of the house, accessible van, ever changing diets…..it was a never ending list of new things. Intimidated by the amount of supplies and equipment would not describe it. How are we going to do this? How are we going to give Leo everything he deserves if we are having a hard time seeing past what comes with SMA? Faith in God. Realizing the special opportunity we have been given to love and care for Leo. To raise a child. And not unlike any other parent, make mistakes but give it our absolute best…together. Faith and Together are the key words here, and the unlikely leadership that came from our dog Wyatt.

You read that correctly, leadership from Wyatt. As new parents we saw a beautiful baby boy, entrusted to us. We felt the unconditional love and bond with our son. And we saw a mountain of SMA hurdles in front of us. But Wyatt only saw Leo. Curious at first, then interested and now inseperable. Wyatt reacts the same to Leo whether he is in his wagon, on his medical stroller or laying down watching cartoons. Leo could be on his bi-pap surrounded by his equipment and if invited Wyatt would clear a path and settle right in next to him. In his mind the medical ramp on the front steps is equally for him as it is for Leo. An accessible van gives him more room to be close to Leo on trips to the park. SMA has not impacted any decision Wyatt has made when he is with Leo. Wyatt was never intimidated by all the equipment, he didn’t waste time on the diagnosis and has not proven responsible enough yet to make changes to Leo’s diet. Dogs are not programmed to react to whether or not somebody is in a wheelchair or walking on their own . They respond to love. Wyatt reinforced our decision on how we were going to live our lives. No sense in trying to be in control of what is out of our control. We will put that energy in to our faith, and let the resulting love guide our decisions. It is all in how you see things, and sometimes that is better through the eyes of a dog.

https://www.youtube.com/watch?v=aSd8cNDfGSw

The LEO grant

A little long, but exciting news!

Those of you that follow Leo know that he (and we) like to stay on the go! This was not always so easy. Leo has to have what is best described as a mobile PICU with him at all times. He has a suction machine, feeding pump, pulse ox (to monitor heart rate and oxygen levels) his ventilator, cough assist machine, oxygen and ambu bag. Then there are the supplies that the equipment requires, and backup items. This is a lot of stuff to transport in and out of a car! We had to load these items piece by piece, along with Leo’s medical stroller. Leo had to travel in a car bed (which looks like a large cooler) so he could remain flat. We could also not travel alone with him for safety reasons. It was not always easy, and we tried not to let this slow us down, but having an accessible van has changed our lives.

With a portion of the funds raised from the 2014 Go Leo Go, Leo was able to get an accessible van which has given Leo so many new opportunities! Leo is able to travel safely, comfortably and with ease. We can have his medical stroller loaded with his equipment, and just wheel everything out of the house right into the van! Leo remains in his stroller which is locked into place, and he wears a special seat belt. Simple trips like taking Leo to the grocery store are now possible, and something we do often! Prior to the van making two stops in one trip was out of the question! He has been from Wisconsin to Florida, and many places in between. He has strolled through Nashville, been to one of the highest peaks on the Blue Ridge Mountains, cruised SC beaches and toured the Low Country. He has even met Mickey Mouse himself at an amazing vacation in Disney World! We are so grateful from the generous support of Leo's Pride that has made this possible, and has given Leo the opportunity to experience so many different places. We could never express how much your generosity has impacted in our lives.

This has been the inspiration for the new grant, the Love Every One (LEO) grant of which we will be awarding to two different families! We are so grateful for our van, and we want others to be able to experience the joy and freedom that comes with obtaining an accessible van. Our goal is to have $10,000 from Go Leo Go funds to be divided between two families. One grant will go towards a family that has a child (or children) with SMA. The other grant will go towards a local family that has a child (or children) that also have a need for an accessible van for medical reasons. We are so excited that Leo's Pride is touching people's lives in so many ways! The grant application will be available after Go Leo Go when funds have been raised. Check back at the end of the year for details. There is no additional information at this time!

SMA Awareness: A cold can be fatal

A minor cough or head cold for one baby can be fatal for a baby or child with SMA. Those with SMA are at high risk for infection and pneumonia. This is not because they have a weakened immune system. In fact, most have an immune system as a healthy child the same age would. Because children with SMA (type 1) do not have a cough strong enough to clear their lungs, secretions from a cold or other infections can become lodged in the lungs and lead to pneumonia. Viral respiratory infections such as RSV can often be life threatening. RSV is highly contagious and like colds, is more common in late fall and winter months. In a healthy baby this is equivalent to a very bad cold. For a baby with SMA, this can cause severe breathing problems and lead to hospitalization and death.

We always have to be very careful with what we expose Leo to. If anyone has had a cold, been around someone with any signs of a cold, or even has a tickle in their throat then we can not have Leo exposed to them. It is just not worth the risk. If we are going to be in a group of people we always make sure no one is or has been sick. We keep hand sanitizer right beside Leo in his stroller for people to use that may come in contact with him or want to hold his hand ect. We LOVE Leo getting to meet as many of his prayer warriors as he can! We just ask that everyone is always mindful of the consequences of Leo getting a cold.

We are always so very happy when someone tells us they have been around someone sick, or feel like they might be getting sick or just aren't sure prior to being around us or Leo. We also love summer and outdoor adventures. We are not looking forward to cold/flu season. It can be difficult not be able to do things because we have to be so cautious. But this is the best thing for Leo. We always want Leo to have every experience possible. We pray we can continue to find a balance in letting him be social and have new experiences while staying healthy.

This was Leo helping in the kitchen yesterday! He loves to help. He also loves numbers, and he wants to count everything we are doing or touching!

SMA Awareness: Communication!

Like Leo's other muscles, the muscle he uses to speak are also weakened. It requires a great deal of coordination to be able to speak, and his strength is not great enough to be able to vocalize as clearly as most. Leo uses various methods of communication. He has a Tobii Eye Gaze computer. This is a computer with games, communication software and internet access that Leo can control all by using his eyes! He has been able to operate this computer since he was 10 months old! His progress and ability to navigate using this computer has amazed all of us! Like other children, he is growing and learning so fast and we are so very thankful that we live in an age where he has access to such amazing technology. He enjoys talking about his best buddy Wyatt, playing music and other games. He has been able to tell me about the animals at the zoo, when he needs a diaper change and say "I love you." He also likes to say wagon ride, and outside (his favorite things). He also loves to talk about his friends, family and therapists that are pictured on his tobii.

He very much understands that this is his voice. He will say things and then look to us for our response after saying them. He will say "I love you" and then grin, cut his eyes at us and give a sweet giggle.

We were originally told Leo would not be able to get this device until he was two years old !! We decided that was just not acceptable! We knew Leo could benefit from this device much younger than that. We took him to the South Carolina Assistive Technology Center, where the director agreed to let Leo try the device. Well he blew us all away! She immediately said "When can you come back?" and "This is amazing, he needs to be getting this device, he is doing it!" The director at SCATP has gone above and beyond to see Leo reach his potential. She does not know the word can't, and will instead find a way. (visit http://www.sc.edu/scatp/index.htm, this program is NOT limited by eligibility criteria and has a mission to help! "SCAPT helps people find Assistive Technology for all areas of life, with particular emphasis on education, employment, information technology (IT) and telecommunication, and community living." I would encourage you to share if you know someone that could benefit from these services. I am so very thankful we have this resource. Leo's SLP has been wonderful as well and works 2x a week with Leo ! (when he is not out for zoo therapy) She shares the same attitude of nothing is going to hold Leo back, and we are so very appreciative of that. Leo loves having speech therapy, and he works very hard the whole time.

Leo also communicates by saying "uh huh" and blinks once for yes. He also makes choices by looking at a particular item. We have learned to read his eyes and other expressions. His eyes tell us so much!

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!