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.
I am so grateful to God for all He has done for me and my family. For helping us thru the expected, in the children we adopted and unexpected. For salvation. For His healing power, love, guidance, protection, provision and faithfulness. I am grateful for hearing aids so Elizabeth can hear. God is so good! We are just forever grateful.Lamentations 3:22-23
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.
Blessings,
susan
Wow, moving story, and what a beautiful little girl! As someone who has worked with the deaf I just wanted to say if you guys would be up to learning even some sign, why not? If her hearing keeps degrading she will become more and more dependent on aids, and while great, they're not like typical hearing (as I'm sure you know). She might always prefer speech in settings ideal for her aids, but signing could come to be a great support in less ideal settings like a crowded room, a large lecture where lips are hard to read, or a phone call. What's more it would give her an easy way to communicate when she feels like being quiet, and probably make her more visually aware and so safer during those times. Studies have repeatedly shown that learning sign is not detrimental to learning speech, so why not at least offer it? No need to force it, but she may well view it as a great gift. It's hard to know what will happen with her hearing, but you know her eyes work! Congratulations on an amazing daughter, and you sound like a fantastic mama!
ReplyDeleteThank you for taking the time to leave a comment and encourage us. What you say makes sense and I felt the same way but was discouraged to do so by the person who did her hearing test. I will look into getting some classes going. I took two years of sign language when I was young and loved it. But never used it and forgot a lot. Thanks again for stopping by and God be with you! Blessings!
ReplyDeleteThank you William Hopper!
ReplyDelete