01 February 2013

Perfectly Normal

"Perfectly Normal" isn't a diagnosis we've gotten real often over the last few months. Until today! As a newborn, Luke failed his hearing screening for both ears, not just once but twice. This morning we had a follow up full blown hearing exam with an audiologist within the Cleveland Clinic's Ear, Nose and Throat (ENT) Center at main campus. The testing took a long time, mostly because Luke needed to sleep soundly for the entire test, which meant that I had to feed him at the beginning of the appointment and then rock him to sleep and cuddle him throughout the exam to keep him in a deep sleep. When the doctor shared that his hearing was "Perfectly Normal" I actually cried tears of relief! I had suspected he had some hearing since I've noticed him startle at loud sounds over the last few weeks, but obviously I couldn't tell if he might have some sort of partial loss or if he might be hearing from only one ear. The doctor did note that he missed one of the pitches in his left ear during the exam, but since it wasn't a trend, she wasn't concerned and attributed it to the equipment being placed incorrectly at the time the noise was sounded.

Following our visit with audiology, we had lunch in the cafeteria and ran into one of our NICU nurses, Audrey... We had her most of the time we were admitted and loved her so it was neat to run into her and have a chance to say hi!

We ended the day with an appointment with the Medical Genetics department. My least favorite of all the different disciplines of medicine we've met with over the last 6 months or so... Again we were told of all of the problems they "predict" Luke will experience. Today's list included painful recurrent ear infections that will keep our household up all hours of the night because of crying, with the highly likely result of him having tubes eventually placed, potential severe constipation (and I felt like they were telling me that my breasted baby who doesn't have a poopy diaper every day is constipated... my understanding from breastfeeding Matthew is that it's normal for some breasted babies to not poop everyday because momma's milk is designed so perfectly for baby that baby's body is able to utilize every ounce for growth and maintenance, thus not having any waste to get rid of), we also "learned" that he will have gastrointestinal esophageal reflux disease or GERD... not to be confused with normal "spitting up" and lastly that he might likely develop Naso-lacrumental Duct Obstruction (not 100% on the spelling of that one) which is an obstruction of the tear ducts in your eyes that causes painful hardness and swelling of the tear ducts... All of these things because he has Down Syndrome... Last time we met with them, we "learned" that Luke would have a 75% chance of hearing loss, which I guess could develop over time, but for today our baby boy's hearing was "Perfectly Normal"!

I can't live in fear of what "might" happen. It's not mentally healthy for any of us to do that. I received a piece of advice from a mother in my area who has a pre-teenaged daughter with down syndrome early on with our prenatal diagnosis and it was to take things "one day at a time". In addition my mom always tells me to not "borrow trouble"... Our Luke is one of our family's special gifts... To heck with those genetics people, I appreciate knowing that we might face some obstacles as our future unfolds.. But seriously, who on this earth doesn't have challenges ahead of them?

PS - I should also mention that we did some bloodwork to verify Luke's white blood cell count today since leukemia is a risk factor for individuals with Down Syndrome and also re-tested his thyroid function as its more common for those with Down syndrome to have a hypo active thyroid.

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