You have been warned this is about my son and my reflections and explanations for those who want to read. This post has absolutely nothing to do with running, except for running to the car, flying down to Charlotte to hopefully consult with a physician that will take the time to listen and look at the whole story, instead of being the south bound end of a north bound mule.
So the precursor: My son, well my youngest son, Colton was born with a variety of birth issues that at first glance you would not be able to appreciate. It has been a long road and the majority of his issues are at stasis right now. However, there is one issue that continues to be a problem, his hearing on the left side is terrible. Two years ago we finally got a umbrella diagnosis of Hemifacial Microsomia, which is very minor, this is after the ruling out of Cerebral Palsy (though we are told he could have minor CP due to birth situations and the dystocia we encountered at birth due to his 10 pound frame at 35 weeks) , and some other rare disorder that I have now forgotten. Colton has been diagnosed with Bilateral Kidney reflux, which thankfully he is growing out of, we went through 3 years of aspiration precautions and several rounds of aspiration pneumonia, which he now has learned to protect his airway. We have facial nerve damage which caused some issues, and he had low tone which he worked hard to correct, though he is completely accident prone. We (well Colton) have gone through rounds of speech therapy, physical therapy, occupational therapy, and countless procedures to improve his functioning. I have fought extremely hard to not give him a blanket diagnosis because his functioning capacity is almost equal to that of his peers, and he is intellectually above average. Watching him now the only difference is hearing. I have never wanted him treated differently and he is not. This brings me back to the issue at hand his hearing. We (the family) have always noticed that Colton did not respond like Connor and Caeleigh, he did not startle and did not get scared at loud noises, however he passed his newborn screening test. We made several trips to the Otolaryngologist and we were told tubes were in order. The first and second sets showed no improvment, so we switched from Brenner to UNC-Chapel Hills pediatric department. The news was granulomas behind his ears, and those were surgically removed and tubes were placed and an ABR was done to assess his hearing under anesthesia, the results showed a slight deficit but that could be from the granulomas. We started modifying the way we interacted with him, though we had always done some signing with him as a baby, we relied on those signs, as well as making sure he was looking at us when we talked and modified our tone and voice. We have been on this road for 5 years, and each time another physician wants to place more tubes and do more surgical approaches, each time the percentage being less than a 50% success rate. To me the risk of anesthesia out weigh a 30% success rate. I have researched and spent countless hours finding peer reviewed articles to show these physicians. I am not ignorant, however I do not have M.D at the end of my name, which means often times a pissing match ensues. Children with Hemifacial Microsomia have hearing loss and they have visual loss. I have never been able to get past the egos because he was showing only hearing loss, until now. Last week Colton had an appointment at his regular pediatrician and he had visual loss. Fortunately, or unfortunately now he has two factors that will support my fight against him have facial nerve involvement being the root cause for his loss. I have come to the realization that more surgeries are creating more scarring of his ears, and he doesn’t have infections nor anything that points to being bacterial. I am okay with having a child with hearing aids and at this point that is what we are pushing for, and for the first time I have a pediatrician, his normal provider that has seen him for 3 years is on board. If hearing aids are the worst thing we are dealing with, life isn’t bad at all. There are many children that have far worse issues and who have a ten fold harder road to walk. I am sure tomorrow will be a battle and I have my research in hand to present like I always do, yes I am that pain in the ass, however it is a small fight for the greater good in the grand scheme of things. I am sure any parent would fight hard for their child, and I am just blessed enough to be educated enough to pull such facts and know the procedure. So tomorrow is the day. Always educate yourself and question, ask questions, don’t be afraid because what you don’t know can hurt you. I am optimistic for tomorrow appointment. If you made it this far thanks for reading
gobiggirlgo 