Over on Adeye’s blog, No Greater Joy Mom, she has been putting together a list of adoption related information for others to access if they are adopting a child with a certain special needs. Kind of a resource list. People who have adopted children in those cadigories link their blogs to each one that pertains to a child they adopted, so if someone is adopting a child they can read blogs about that special needs and gain encouragement and information by reading others blogs that have walked the road before them.
So since today’s category was a call to those that have adopted a child who was blind or hearing impaired, I thought I would write and share what we went thru with Elizabeth and her hearing as it was something we were not expecting.
Most people that know us or follow here know that we adopted Elizabeth thru foster care. She was born at 34 weeks and was a blue baby. She never turned pink because she was born with a three chamber heart. (truncus arteriosis) She was taken right away in for a surgery to make a fourth chamber and re-route some plumbing so to speak. To bring much needed oxygenated blood to the rest of her body. During this operation they put her on a heart lung machine and fully opened her chest. It was open heart surgery, broke ribs and all. The nerves to a persons vocal cords run way down into your body and when they did the open heart, they either cut her nerves to her vocal cords or stretched them paralyzing her vocal cords in the closed position. She had many breathing issues over the next weeks, went into respiratory failure and needed a trach in order to breath. Most babies with heart issues also do not nurse very well and she was no exception. She soon needed a g-tube in order to get all the daily calories she needed to grow. We fed her our good goats milk and she thrived by the grace of God. I know this is not about her hearing but I am sharing it because these are the things we KNEW about her when we took her as a foster child. As it came time to adopted her she had lived with us from the time she was 12 weeks old and we knew she was going to need many more open heart surgeries in the coming years. That she might need her trach and G-tube always. (praise God they are gone) That she had loss of oxygen at birth and has Cerebral Palsy. (very low tone) We knew she had lung disease and got sick easily. That she would need oxygen at times thru out her life. That she needed kidney repair. These things we knew BUT...Sometimes things come up that are unexpected along the way on your journey of raising a child, especially a child with special needs and her hearing loss was one that took us by surprise.
Her hearing was tested as an infant and there were not concerns. As we raised her, she was in PT, OT and speech. She learned to speak around her trach and it was kind of funny as all my kids were in speech and she, the one with the trach was discharged at three years old because she spoke so well and so clearly. Because of this we never once gave a thought to her hearing at all. Until she was five. I started to notice that if I called the kids in off the playground she would continue to play and not even look up. I remember once when the UPS guy was speeding down our long drive way and the kids were all playing on the playground and in the driveway up by the house. I was working in my flower beds and saw him coming not knowing if he saw them or was going to slow down...I ran toward the playground yelling at the kids to quick go and stay back out of the way on the playground as a truck was coming. She was riding a little ride on toy in the drive way and didn’t even look up. I ran to her and moved her to the playground. It scared me.
I realized then that she might have a hearing issue. As the few times her not responding in the past I blamed on her being rebellious and just not wanting to respond. As she did that too. :) But this was obviously not that at all.
I started to pay attention to her during schooling and she would turn up her head phones so loud when doing computer work. She always sat very close to the TV on movie night and said it was not loud enough. She also often did not participate in conversation unless looking in our faces. But yet she communicated well and so clearly. So I took her in to her pediatrician. She failed the hearing tests in his office that day and was sent to a specialist. They did the ABR test. Failed it. They put her in a sound proof booth and she sat in a chair. A lady sat outside the booth and they could see each other thru a window. The lady said a word for her to say and Elizabeth said most of them great at all levels of hearing. Then the lady did the different beeps and sounds at different frequencies. Elizabeth failed many of them and didn’t hear them. So the lady went back to, her saying words for Elizabeth to repeat but this time the lady hid her own mouth with a piece of paper. Elizabeth failed. She had read the ladies lips thru the window the first time around.
After they finished the test it concluded that one ear did not even hear up into normal speech And the other ear was impaired but did not need a hearing aid. I felt like I had failed her. Like I was the worst mom in the world to have missed this for so long. I try to be so in tune to each of my children and their needs. To pray for them and try to give them the best we can so they can become their best too.
So we got a hearing aid for her right ear. We went back in six month and her hearing tested a bit worse in the left ear but they thought it was just her being so young that maybe that time was not as accurate. They said not to worry about it. We went back at a years time and this time her right ear had gotten worse and her left ear now did not hear up into normal speaking range. It was clear now to everyone. That Elizabeth was born with good hearing and has slowly lost her hearing over time. That is why she speaks so well and can read lips so well. She could hear well when she was learning to speak and as she slowly lost it she learned to be a very good lip reader.
As of now, she has had a CT scan done to try to see why her hearing is degrading. It was inconclusive but they did see the abnomalities. They know she has some sort of undiagnosed syndrome that may be DiGeorges. As so many of her effected body systems match up with that one.
I wanted to put her into sign language classes and for all of us to learn it and they said that we could do it for recreation and fun but that since she used to hear, speaks so well and reads lips so well she most likely would not want to use it. Also they said that there is a surgery that is called BAHA (Bone anchored hearing aids) that will help her if her hearing were to degrade to a point normal aids do not help.
So that is Elizabeth’s journey so far with hearing loss and needing her hearing aids. Because she lost her hearing over time when she got her hearing aids she did not like them. She did hear things she missed. Like the day she got them she asked what that noise was and I said what. She said like a bunch of little noises. It was the rain hitting the window. :( She never remembers hearing that before. Or once we were in a parking lot and she grabbed my arm and said what was that. I said that beep beep sound. She said yes. It was someone remotely locking their car as they walked away from it. She didn’t know we set a timer when cooking because it alerted us with a bing when things were done. So many things.
But she also felt off balance and a little dizzy when first going into hearing aids. I think partly because she was aided in one side and not the other at first and maybe the input of sounds was at a different level. When they added her other hearing aid she went thru it again for a week or so while getting used to wearing two of them.
She is supposed to wear them all her waking hours. They encourage her and want her to. If we are going to town, watching a movie or are having a busy day she wants to wear them and not miss a thing. She runs to put them in. But there are some days (usually two or three days a week) that she would prefer just to not wear them at all. I will notice she does not have them in and I will say, where are your hearing aids and she will say, I just need it to be quiet today. I don’t want to hear anything. :( Bless her heart. On those days I ask her to put them in at least during schooling and family time when we are all together but let her take them out on her down time when she is reading or something. I personally would like her to have them in all the time because you never know when there might be an emergency and she will need to hear. Like when we swim she can not wear them and several times I have needed to get her attention and she could not hear me. Very scary. Her next set of hearing aids she will be old enough to get the ones that can be swum in. Praise God.
22 Because of the LORD's great love we are not consumed, for his compassions never fail. 23 They are new every morning; great is your faithfulness.