Early this morning, Landon and I left Manhattan for Topeka and his audiology appointment. I was worried yesterday evening that I would have trouble waking up to leave in time but Landon made sure that wasn't a problem. Starting at shortly before midnight, Landon cried/screamed/howled until almost 6 am. We tried every way to soothe him we know to no avail. Several times during the night Karen or I had to walk away. I am so thankful that there are two of us working together to raise this boy and thousands of people behind us. While I consider myself patient and even-tempered, I came to understand Shaken Baby Syndrome last night. Karen and I have enough self-control to remain relatively calm and awareness to walk away when we need to but if there were only one of us, alone, with a screaming baby in the middle of the night with no end in sight? I can understand the emotional snap that must happen for someone to shake their child. I in no way excuse that behavior but I am beginning to comprehend the mental state of those that do break down.
I elected to take Landon on my own to his appointment so that Karen could sleep for a few hours and recover. I wanted her to be well rested because I made her watch him while I went into a mini-coma when we arrived back home shortly after noon. Landon was exhausted and slept in the car to and from the appointment as well as right through his testing. Upon closer inspection we found that Landon had a bruise around his umbilical stump that was probably causing his pain. He was fussy again tonight but with some Neosporin analgesic he very quickly fell back asleep and has been much better the rest of the day. We think he accidentally hit his stump last night while fussing because he was too hot and tore a small piece of skin on his belly button. We have been diligently wiping it with antiseptic to ward off any infection but the skin is not hot or inflamed so we are not overly worried about an infection.
After discovering the bruise on his belly button, I tried to schedule an appointment with a pediatrician to see him tonight. I was frustrated by the response of many of the pediatricians in town, particularly with their lack of empathy. I began calling after deciding he had a possible open wound in the interest of checking for and preventing infection. This was shortly after many of the clinics in town had closed by not excessively late. Even the on-call pediatricians told us that we could only schedule an appointment for the morning and would not see him tonight as he was not a patient of their clinic. I explained that his pediatrician is a genetic specialist in Nebraska due to the genetic nature of his condition but that this problem was unrelated. I was told repeatedly that if I was worried I could take him to the emergency room but that they would not see him unless it was by appointment tomorrow. I am confident that Karen and I can recognize a real emergency and in the mean time we will care for him with our own skills. Their attitude came across as disinterested at best but hopefully we will have a better experience in the future.
Anyway, at 8:30 this morning Landon and I met with the audiologist who tested his hearing in both ears. After running several tests over the course of 2 1/2 hours I received a familiar response of "well we just don't know." When testing the ability of the nerve to send a signal from his inner ear to his brain, Landon failed on both sides. The nerve was able to transmit the signal to his brain but there was interference along the way. This is likely caused by the blood/fluid around Landon's brain. The right ear transmitted the signal in a normal amount of time but the left ear's nerve was slightly delayed. This does not tell us much about his ability to hear other than we need more testing, which will be done when he is four months old. The audiologist also ran a test to check the function of Landon's cochlea on each side. The cochlea is a hollow tube with microscopic hairs inside that vibrate and move when activated by sound. This is the organ that turns sound waves into a nerve impulse that we hear. The cochlea on Landon's left side was perfect but his right ear showed some interference, which could be due to several factors. Likely there is no major problem and it is a function of the side he lays he head on when he sleeps, which can allow fluid to accumulate and interfere with the test.
Essentially what we found out today is that we will learn the most from watching Landon and judging his reactions to see if he hears well or not. Karen and I have seen him react to even very soft sounds so we are not concerned with his ability to hear but rather with his ability to interpret what he is hearing. We won't learn more about that until he is much older and able to tell us what he is hearing. In the meantime, I would love to hear suggestions from all of you of music to play for Landon. I have been trying to introduce him to as much as I can, including Count Basie, Mozart, Beethoven, The Beatles, Louis Armstrong, Hank Williams, and an assortment of other artists and songs I think really represent the best of music. All suggestions are appreciated.
Our good friend Tayley visited again tonight and was able to hold Landon for the first time. She brought us food, stayed for several hours, and was even nice enough to change one of his (very full!) diapers. The diaper change was probably a good experience for her as Tayley and her husband Cameron will be welcoming her own son, Wylde Glenn, to the world in September. That boy has also been blessed with a terrific mom and dad and Karen and I are already looking forward to play dates for our kids.
As I'm sure you can imagine, we are looking for consistency in our lives but the constancy of knowing nothing or next to nothing about Landon's condition has gotten old. We approach most appointments with a bit of resignation that we will likely know little more leaving than we did coming in. I did some searching this evening for dealing with the unknown and found a wonderful quote by Corrie Ten Boom, a Dutch woman who saved the lives of hundreds, if not thousands, of Jews by hiding them in their home and helping them reach the underground during Nazi occupation of Denmark during World War II. She wrote "The Hiding Place" about the experience. She was imprisoned and sent to a death camp by the gestapo in 1944 but was later released due to a clerical error. When asked later about how she coped with her unknown fate after imprisonment, she said this:
"Worry does not empty tomorrow of its sorrow, it empties today of its strength. When a train goes through a tunnel and it gets dark, you don't throw away the ticket and jump off. You sit still and trust the engineer. Never be afraid to trust an unknown future to a known God."