He replied "Because you have so little faith. I truly tell you, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there,' and it will move. Nothing is impossible for you." Matthew 17:20 NIV
It was very devastating in the beginning, but what was so foreign to us 3 years ago has now become our norm. Doctor appointments, surgeries, therapies, multiple and often ER visits and observations, and not to mention all of the questions that consume our minds about his future… But, we are at peace with our new norm. We've never ask, “why us?” or “why Robbie?.” We know why. It’s because we are strong, and we have faith. And lucky for him, he has a loud mouth Mexican American mother as his voice and anyone who knows me knows I won’t go unheard.
A week ago we rushed Robbie to the ER for the 3rd time in 6 weeks. First time it was unexplained 104 fever and abdominal pain, the second time, he had a 2nd double ear infection in a matter of 2 weeks. The first round of antibiotics didn't treat the infection. So now, they had to split an injection in 2 to jump start the healing process followed by 10 days of oral antibiotics. If you are wondering, yes, they injected him twice. One in each thigh. The 3rd ER visit was a charm, Robbie had another unexplained 104.1 fever with abdominal pain.
I dropped off Robbie at preschool at 7:30 like every morning. By 12 noon, I get a call from his teacher letting me know Robbie had a 102 fever. My father in law picks him up and meets me at the ER. We are triage and sent back to the waiting room. With in 10-15 he fell asleep in my arms and the fever went from 102 to 104.1. I rushed him to the nurses station and they took him right away. To make a long story short, the doctor walked in and without examining him, basically wanted to wash his hands by saying "sorry Mrs. Gomez, there are to many hands in the pot, I can't help your son.... I don't have any answers." My heart sank, but deep down I knew he was right. He has a specialist for basically every nook and cranny of his existence. Of course he didn't have any answers. Why would he? He is just a doctor, a human being. He is not God. This is were I reached into my pocket for a mustard seed. I wasn't expecting any answers. I had faith, the faith that would and will move mountains. Yes, all I want is for this cycle of fevers to STOP. No more fevers. Please.
As routine, The ER doctor orders blood work and cultures, and chest x-rays to rule out pneumonia and tuberculosis.
The unexplained fevers have been happening closer together, something had to be done. So, in between waiting for Robbie to be picked up by my father in law, I emailed his pediatrician, upset and taking a "no," or "let's wait and see" for an answer. The pediatrician immediately referred us to a pediatric Infectious Disease specialist. Turns out, Robbie's pediatrician had been consulting with this specialist for a while now, and just now we were going to be able to be meet with him. What took them soooo long? It's completely and utterly frustrating to experience such a slow process. I don't understand it!!!
In walks the ER doctor again after Robbie's x-rays. I notice he is uncomfortable, nervous, and a crack in his voice as he tells me that Robbie will need more than just a pediatric infectious disease specialist. That his case is rare, that he is unique, that he is at much higher risk of cancer...blah, blah, blah. Yes, I know who my child is; what the secondary effects of the overgrowth syndrome are. I also know he is a special little boy who's mission is to teach everyone about faith, patients, perseverance, tenacity, and to show what a true Superhero, and Child of God he is. He walks around without a care in the world. He knows that his foot was amputated and that he will have another piece of his leg taken off. And yes just at Kaiser alone, Robbie has a Pediatrician, Genetics Specialist, 2 Orthopedist, 2 Orthopedic Surgeon's, Physical therapist, Occupational Therapist, Nephrologist, Endocrinologist, Neurologist, Neurosurgeon, Pediatric Oncologist, and soon to be added Pediatric Infectious Disease Specialist. (Now that was a mouth full.) Yet, you mean to tell me he needs higher level of specialty, and that these specialist cant figure out how to help my son. They just follow protocol. I have wondered how can they follow protocol to something they know nothing about? Makes me wonder what they are not telling us. Here enters my mustard seed again. It never fails me.
I straight out asked him if my son had cancer. He did not confirm nor deny. He only repeated over and over, "your son will need a higher level of specialty than that of a infectious disease specialist. So.....we wait for the infectious disease specialist to contact us. Mustard seed!