From a mom's prospective

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My son was born quiet. He didn't make much noice when he cried, and the DR's took him away for a bit to check him out. He came back awhile later and we were told it was normal for babies to have fluid in their lungs and have to clear it out. We noticed his cry as the weeks went by and then months made us worry. He would spit up often and choke on the milk. He sounded hoarse when he cried like he had a terrible chest cold. We were told at 3 'onths that he may have croup or possible asthma related but most of the answers were "a cold". He was gaining weight and seemed like a pretty healthy boy. At 4 months old he began to get quieter and it was hard to hear him when he woke up at night. He began to sleep in the car seat propped up so he could keep food down. We switched formulas and tried inhalers but nothing helped. He began to turn blue in his lips and developed a very loud strider. We finally found an ENT that chose to take a look down his throat at 4 months as well in Tennessee. He saw a cluster of what looked like a Larngeal web and required surgery right away. But this was considered pre existing so we were unable to get him in. We waited and called so many places and he started having seizures. His breathing worse and he began to lose weight. But his often was okay so they wouldn't ever admit him. At 7 months we found a Dr in Michigan who would help us. My son and I flew from Texas to Detroit and saw an ENT at 3pm the same day and he saw the same web. He admitted him due to a completely blocked airway. After surgery, the Dr explained that the "web" was actually a cluster of papillomas and that we would require multiple surgeries, since there hadn't been a cure found for the disease. I hated myself, my husband and I was scared. But my son laughed out loud for the very first time and cried so loud that everyone looked at us. It was amazing!!! But it faded and We went back 11 days later for another surgery. We were given interferon which broke his little body out in eczema and he didn't seem like himself. We drove and flew back for a few surgeries 6-8wks apart after that. By 1yr we were back in TX, without insurance and had to be seen due to breathing issues. The ENT couldn't see him but recommended us to a personal friend, fellow pediatric ENT in Houston. We met the next morning, got my son scoped and had surgery the next day. We went every 3-4 months after that. We also started Cidofovir injections, in a few month trial period and it prolonged surgeries to every 6 months. We stopped them once we made it to 6 months 3 times in a row. (2013)But 2 1/2 months after stopping he was gasping for air in his sleep, and had emergency surgery again. No symptoms because he was so active and the disease began to move down under his vocal chords. It was very scary. We got back on the injections a few months in a row and back to every 6 months. So we stopped again, and 7months later he had growth all over the place but a clear airway. It's working but I think his little body depends on the Cidofovir to fight the disease. I'm afraid it will cause cancer, and it's a very serious risk. But I trust our ENT and know he knows what is best for my son. He's a "Normal" kid and is very active as well as loud! He is hoarse but not many notice unless he talks a lot to them. He has had 27 surgeries as of April 2017. I pray everyday for a cure and that he won't have to deal with this for the rest of his life. But to us, this is routine, and Normal. He use to cry and scream, kick and pull IVs out. Now he gets excited for surgeries. Walks back by himself and wakes up ready for a Popsicle and apple juice so he can go home. The older he has gotten the harder recovery is. He throws up more and it takes a full day sometimes two to get back to his normal self. I hate that part but he's such a strong kid. This journey hasn't been easy and I know we will have more things to come but I know we can get through it. "While I breathe, I Hope"