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, Love Muffin 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.