The Story of Love Muffin: How the Family of Disabled Child Relies on Solar

Solar can help people in ways you can’t imagine. As a solar company that’s been in business for over 20 years, we’ve heard all types of stories from our customers about the beneficial impacts solar has had on their lives, and they are all inspiring. Once in a while though, we come across a solar story that is truly breathtaking, which is why we wanted to share the story of Love Muffin. “Love Muffin” is an alias given to the child of one of our customers, Rob Knecht. Love Muffin is a three year old with a rare neurological condition caused by brain damage at birth. Due to her condition, Love Muffin has to be hooked up to medical equipment and has to be in a temperature controlled environment at all times to stay alive. Due to this, keeping her healthy has been a huge expense on the family - as powering her medical equipment and keeping her cool requires a ton of energy, and therefore was costing Rob and his family an unmanageable amount of money in power bills.  So unable to keep up with the ridiculous electric bills required by Love Muffin’s condition, Rob turned to us to install solar on his home. Now, about a year and a half after his installation, we reached out to Rob to get the full story of Love Muffin and how solar has helped with their financial situation. Rob was kind enough to answer our questions and fill us in on the journey he’s gone through with Love Muffin, and how solar has helped along the way:Give us a quick summary of how you met your wife, and how you ended up in Escondido with your family. After serving with the Marines overseas between 2011 and 2013, I received orders to go to San Diego, CA. I was so excited that I jumped onto Match.com, a dating website. About a month later, I met my wife. The moment I heard her voice, I knew that we were right for each other. I visited her in June 2013, before moving home to Downtown San Diego in September. We were engaged in June 2014. After three years together, we purchased our home in Escondido, where we now live with our daughter, Love Muffin, and two dogs, Kirby and Rosie. How old is “Love Muffin”, and what is the disease she has called? Love Muffin is 3 years old! She will be starting pre-school in the fall with Escondido Unified School District but has been basically in school since she was 6 months old. She’s been participating in occupational and physical therapies multiple times per week and has been participating in speech therapy for the past year. She also previously received therapy from the County Regional Center. The condition Love Muffin is working to overcome was caused by hypoxic ischemic encephalopathy (HIE), which she incurred at birth. HIE is caused when the brain loses access to oxygen, which she did when her placenta gave out; for about 24 minutes. As a result, her basil ganglia (the part of the brain responsible for fine muscle movement) was injured, and she therefore is diagnosed with cerebral palsy. When did you find out that she had this condition? Love Muffin was formally diagnosed just after we moved into our new house, around January 2018. I remember hearing the term “cerebral palsy” (“CP”), which I’d heard many times over my life but never really understood. I sat in our new living room and watched a YouTube video that described it. It’s basically paralysis caused by the inability for the brain to control a portion of the body. Some people have it, but it’s so minor you wouldn’t know. Some have it so severely that they are literally paralyzed, can’t speak, and need things like respirators. If the first case is a “1” and the last case is a “10,” Love Muffin is about a 4. What were some of the early warning signs? The most obvious warning sign came on the night of Love Muffin’s birth. My wife labored for 26 hours; her fluid was already very low and the baby was breach. We were trying to give Love Muffin a natural birth in a comfortable place; our home at the time—which was then in San Clemente, California, but at about 1:30am the OBGYN announced that a natural birth was off the table. We’d carefully selected a back-up OBGYN that was willing to do a natural, breach birth in a hospital setting. However, his hospital was an hour away, in Glendale, California. After arrival, the nurses monitoring the baby’s heart rate announced that it was dangerously low. My wife was taken back for a stat cesarean section. I thought it would be a while, so I started to settle into the waiting room. But they came and grabbed me within only a few minutes. They were already doing CPR on Love Muffin. The Lead Nurse was telling me that she was delivered deceased and the nurses were doing everything they could do to revive her. About 10 minutes later, she updated me: they would be giving up soon and would officially declare Love Muffin deceased. Then, miraculously, Love Muffin’s eyes sprang open. I yelled to the Lead Nurse, but she tempered me, telling me that it was caused by adrenaline they had given as a last-ditch effort, and that they were going to call off the CPR. Shortly after calling off the CPR, Love Muffin’s heart monitor began beeping. “We’ve got a heartbeat!” yelled one of the nurses as they wheeled Love Muffin past me in a gurney. Quickly, she was rushed her into hypothermic treatment to help stop further injury to her brain.  Love Muffin remained in the neonatal intensive care unit (NICU) for about 2 ½ weeks while she was tested and monitored. She earned the nickname “Miracle Fighter,” as she achieved all of the milestones needed to be taken home, including eating out of a bottle.  What was your initial reaction to the diagnosis? It was good to have a better idea of what we were up against. We felt like we were part of a community. A community of families whose children suffered HIE, cerebral palsy, special needs. But it also felt more permanent. Not knowing gives you hope. What are some of physical / mental effects of the disease? Mentally, Love Muffin is all there. One of the beneficial side-effects of having part of her brain non-functional is that it enables more energy to be given elsewhere. According to doctors, her brain is “overcompensating” in the part of her brain responsible for intelligence. I like to think this means she can be the next Stephen Hawking. Physically, Love Muffin is extremely limited. She has basically no muscle tone, which makes it harder for her to do everything; from grabbing something with her fingers to walking. She uses a wheelchair to get around, but also has other orthopedic devices, such as a Hart Walker and a Gait Trainer that enable her simulate walking on her own. As she gets bigger, she will have her own SUV/van to transport her and her equipment, including a larger wheelchair. Overall, she has a great demeanor. Her nickname “Miracle Fighter,” she lives up to constantly. She smiles liberally, she loves with her whole heart. She loves to communicate, though her speech continues to also be delayed—she is super expressive. How has it been adjusting your life to caring for her? For my wife and I, this is our “normal.” Love Muffin is our first and only child. We know no other way. Something people say, “that must be so hard” or “I can’t even imagine.” We have no other frame of reference. This is our life. How expensive are her treatments, and what do they entail? In terms of the expense, I continue to serve as an Activated Marine Reservist in large part because TRICARE insurance covers Love Muffin’s treatments, medications, equipment, and therapies.  What kind of medical equipment is required at your home for her? At home, Olive uses a Kangaroo eternal feeding pump to provide her with formula via a gastrostomy tube (G-Tube), which she had installed at 9 months due to a separate medical emergency that caused her to be separated from my wife, breaking her from breastfeeding. However, what’s even more relevant is that Love Muffin’s baseline temperature is elevated due to the hypothermic treatment she received at birth. Particularly when she was very young, she could easily overheat. As a result, for both herself and her pump, we kept the air conditioner (AC) on 24-hours a day, 7 days a week. How much, if you know, did those add to your power bill? Of course, our AC bills were high. However, in August of 2017, we received a bill for over $4,000. This was too much, we had to go onto a payment plan. Clearly, this was unsustainable, our savings was rapidly diminishing to nothing.  What made you look into going solar? That November we moved into our current home, which came installed with a 6 SunPower solar panel system. It wasn’t enough. This was my opportunity to do something good for both our ecosystem and our family. I moved immediately to install more. What made you choose SunPower by Stellar Solar? Before November was through, I had called Stellar Solar and was connected to Marc Cirelli. In December, he’d completed an estimate and I made the purchase. I put as many solar panels on my roof as would fit: 18 more, for a total of 24. That brought the system to about 7.59 kilowatts and included two 240-volt outlets that Marc had installed for me in the garage. These were great, and I got a 2017 Chevy Bolt to go with them. How was your experience with SunPower by Stellar Solar? My experience with Stellar Solar was great, and still is. I will continue to sing Stellar Solar’s praises. I was able to refer two of my friends to install Stellar Solar systems and even held a “Solar Open House!” Marc and I remain in contact and I gladly hand out to his number to anyone interested. I also love to share Stellar Solar’s posts on social media and watch their “Solar Cribs” series on YouTube. How much would you estimate you save with solar? Right off the bat, I save at least $200 a month that I don’t spend on gas by powering my Chevy Volt with electricity. My monthly payment for the loan I took for the additional 18 solar panels is $160 a month, so I’m already net gaining $40 a month there. Then, I’m at about net zero on my electricity payment, so I’m running the house electricity essentially for free. If I was to continue paying an average of $500 a month for electricity during non-Summer months and $3000 a month during the three Summer months, I’d be paying about $10,500 per year for electricity. So, paying $160 a month is worth it. To draw it all the way out, that is about an $8,580 net gain per year—money that we are not having to pay to an electric company. Are you able to put some of those solar savings towards Love Muffins care? In December, the Knecht family will be investing the funds we’ve saved into a down payment on the SUV/van. Right now, we’re on the market seeking the right size and fit for Love Muffin, her wheelchair, and other equipment. We were hopeful to purchase another electric vehicle, and do recognize the savings we would achieve by saving the approximately $300 we expect to pay each month to fuel this type of vehicle. However, unfortunately, the price point for an electric vehicle SUV/van is a bit out of our reach right now. Following the purchase, we’ll begin to look towards modifications to the SUV/van to enable rear or side power-loading of Love Muffin in her wheelchair. From there, who knows! But things seem like they’re just going to be more and more expensive as she grows. So maybe we will invest future energy savings while the market is hot! What ongoing challenges do you deal with (financial, bureaucratic, emotional) in keeping Love Muffin healthy? As she gets bigger, her equipment does, too. That also means her care is becoming more expensive. I won’t remain an Activated Marine Reservist forever, so I need to complete my transition from active duty into a new career field that will enable me to ensure that her quality of life and access to equipment, medications, and therapies she needs will continue. She has the mental resilience to do her part. She just needs me and my wife to continue to do ours. What is your hope for her future? Our hopes are that Love Muffin will walk, that she will be capable of self-care, that—one day— she will go off to college and discover the answers of our universe. We hope that she will transform the way we view the universe, and the way we view those with her condition. We hope that she will also, along the way, find a partner that will love her as intensely as my wife and I do.  What have you learned about your own life through caring for Love Muffin? I’ve learned that family is the most important thing. I’ve learned how to truly love and be loved. Any message to other parents dealing with similar situations?  We are a Team. The answer exists, you just have to find the network and ask all of the questions. The only thing separating you from what your child needs is information and a sense of empowerment. There are compassionate, empathetic people out there that want to help. Keep moving. When you get to the other side—or just have enough time to take a breath—, reach back and give the next parent a hand.    Oh, and get solar panels.  

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