Yesterday we went to Johns Hopkins for Jace's audiology test. He was very cooperative, as usual. In fact, both drs said that they were in love with my little boy. I think he liked all of the attention. The audiologist was excited to begin.
For the first test, electrodes were put into his ears at the same time while he was in a soundbooth. Ron went in with him to play and keep him busy as I waited outside the booth with the dr. The audiologist started out with 60 DB(decibels)-which is a typical conversation level for you and me. Nothing. She moved it to 80, then 100 DB....nothing. She turned to me and said "...we usually don't go past 105 DB, so I will try that next. " Still nothing. She was so curious that she turned up the whistling to 120 DB. I could see her hopeful expression disappear as she turned to me and said "He is profoundly deaf-in both ears. Hearing individuals are usually uncomfortable at about 100 DB. This noise level (at 120DB) is equivalent to a jet engine or being at a rock concert and standing right next to a speaker. Let's try more tests."
Next, she placed what looked like headphones on each ear-first the left, then the right. She told me not to expect anything because she knew he wouldn't hear any vibration throughout the ear. She was right. Jace didn't seem to mind though. He looked at books and played with pegs.
The final test was the one that hospitals give infants when they are born to measure sound waves to the inner ear. Again, she told me that nothing would happen, but she wanted to be 100 percent thorough. More of the same.
The dr appointment immediately followed the hearing tests. The dr told us that his hearing loss could have been from a childhood illness such as meningitis. Or, it could have been a recessive gene, meaning hereditary. The only way to (maybe) know such things is from DNA testing, which is a good idea, because we will be able to know what the chances are (percentage) that Jace's children could be born deaf. And since we know nothing about his bio family, it could be helpful.
The next step of course is to decide whether or not we should get him cochlear implants. This is a device that is inserted into the inner ear, through surgery. Later, after healing, a second surgery is required to insert the amplification inside his head. The final step is a magnetic device that Jace would wear outside of the piece in his head. Obviously, I have a lot more research to do!!! The surgery has risks, as all surgery does. The thing that scares me the most is that there is a facial nerve so close to where they would be working near the brain that if interrupted could cause facial distortion. However, risk is less than 1%. Doesn't matter-any risk whether low or not-this is my baby!
Most deaf people growing up in deaf families are completely opposed to this surgery, as deafness is its own culture. However, Jace's family is a hearing one. I am passionate enough to go to ASL classes and educate myself as much as possible. My family doesn't share this passion. Of course they love him like crazy. But sign isn't easy to learn quickly. Jace may benefit from cochlear implants for this reason alone. I don't want to be selfish and say 'Well, he will learn to sign and be fine." Truth is, if he can't hear, and family can't talk to him (only me), he will feel alone. Even isolated. I don't want that! The point is, I need to research-and research again, with prayer! Lots of it! Many, many points to consider.
Monday, we have an appointment for a CAT scan to see if the bone is intact. Sometimes, a childhood illness can leave the bone calcified thereby making it hard to insert the device. They want to make sure this bone is in good shape so that if we decide to go ahead with the surgery, there won't be any surprises. Also on Monday, he will have a sonogram of his kidneys since (while in utero) the brain, kidneys and ears are all formed at the same time. After these tests we will get an EKG to rule out any heart problems. Again, they just want to be thorough.
I want Jace to have the best quality of life he can possibly have. If that means inserting a device, without too much risk, then so be it. In my research for deaf culture, I have read that the average deaf child graduates high school with a 4th grade reading level. Does it have to be like that? No. I intend to change that. I intend to give him the best education that I can. If that means I have to work with him daily, I am up for it. I made a promise to God, to Jace and his country to love this boy with all my heart, and to provide the best home that I can. I intend to keep that promise.
God brought Jace to me, and I am confident that He will see this through. Every detail has already been mapped out before he was even born. There is no detail that doesn't go through God first. Psalm 139: 13-16 says:
13 You made all the delicate, inner parts of my body
and knit me together in my mother's womb.
14 Thank you for making me so wonderfully complex!
Your workmanship is marvelous—how well I know it.
15 You watched me as I was being formed in utter seclusion,
as I was woven together in the dark of the womb.
16 You saw me before I was born.
Every day of my life was recorded in your book.
Every moment was laid out
before a single day had passed.
This is where my hope rests. I know it won't be easy, and that the road is long. Sometimes I think I blog just so I am reminded myself of how delicate we all really are, and how much we need to depend on the Lord for provision and guidance. For strength and for serenity.
Look at this face.
Does this look like a child affected by profound deafness? Nah, not Jace.
Yes, Dad...if you're seeing this, Jace's shoes AND my kitty are on my kitchen table...*GASPS*
Signing 'I LOVE YOU"....
