Mercy is today 3 years old and full of life! She is also quite a strong-willed child. No matter how hard we try, we still have trouble getting her to say "please" and "I want this" and things like that. In fact, more often than not, she just grunts or uses gestures to show what she wants.
She is doing much better, though. She has a vocabulary of her own. Some of the words she alters so she can pronounce them. Some are accurate and understandable by others. I'd like to share with you some of our "Mercyisms".
Gabby=Daddy. Geeowt=get out. Graya=Grace. Opie=Hope. Mama=Mama. Mymie=fix my diaper!
a-b-e-d-e-eh-g, eh-i-j-j-eppem-eppopee! q-r-eh-t-u-v, w, y, and z. (to the tune of
"Twinkle-Twinkle, Little Star")
We go bye-bye= we are going on a trip. pider=spider. wee fly=butterfly. quare=square.
dad-un=unknown. bawd=bird. lelo=yellow. gark=shark. hoyt=hurt. amona=good morning. mama=woman
gish=fish. ebbebant=elephant. uff=woof. yeow=meow. ber-ber=burger. aiya=hair. eye=eyes. no=nose
More to come later.
Monday, March 30, 2009
Friday, March 13, 2009
Our Experiences With Hearing Loss Caused By Microtia, P. 2
Mercy's bone-conduction hearing-aids would rest on her skull bone. Using a strap to hold it in place, the sound amplifier would project onto the skin on the bone. This sound transferred to the bone and then it was transmitted internally to the inner ear. Sounds complicated, but it works. I still regularly test out the system (while checking to see if the batteries are working) on my own head. I would plug up my ears and place the speakers anywhere on the skull bone. And yes, you can hear that way.
Mercy has a thin layer of skin covering up the ear canal area. This is like someone putting their hands over their ears and trying to listen to something. Some sounds come in and some don't. And so she has trouble picking up and comprehending, or hearing certain sounds. Most
especially the soft consonants like, "s","f",and "h", as well as "t" and "d" are hard for her to distinguish.
Today, Mercy is a lovely, rambunctious and independent-minded three-year old. She had a much-extended time in the "terrible twos" stage, with her tantrums and panic attacks. I think some of it was brought on by her condition. For instance, she probably heard sounds that we did not; sounds that were uncomfortable for her. She never liked Walmart or very large department stores. I think it was because of the sounds of the air vents and things that our ears tune out. And yet certain sounds soothed her like none other. She really enjoyed the sound of water sprinkling coming from a fish aquarium. In fact, she got a fish tank for Christmas.
After several go-rounds with in-home speech therapy, we finally got her into an elementary-school program that has worked wonders for her speaking ability and comprehension.
She needs alot of one-on-one attention, just to be able to keep up with her peers. Her mom and I are overworked as it is with household and home-schooling duties, so this program was a God-send!
We could not have succeeded if it were not for God blessing us. He sent us people who could give good advice and encouragement. He also gave us patience for the times when the answers were not coming and the pressure to make decisions was great.
This is when you find out if your faith is real. Can it keep you going when you want to give up?
We still have many surgeries to look forward to. Doctors want to open up her ears and possible create a prosthetic look-alike or create something from her own skin and cartilage. They want to try and make her look more normal and improve her natural hearing, if possible. This will be happening soon.
Mercy still hates doctors, nurses, and any place that even slightly resembles a
doctor's office, like banks, hair salons and other places with waiting rooms.
Time (and faith) will tell us if she will ever be a "normal" kid. Sometimes I wonder if I ever really want her to be like that.
I love her just the way she is, as God made her and gave her to us!
Mercy has a thin layer of skin covering up the ear canal area. This is like someone putting their hands over their ears and trying to listen to something. Some sounds come in and some don't. And so she has trouble picking up and comprehending, or hearing certain sounds. Most
especially the soft consonants like, "s","f",and "h", as well as "t" and "d" are hard for her to distinguish.
Today, Mercy is a lovely, rambunctious and independent-minded three-year old. She had a much-extended time in the "terrible twos" stage, with her tantrums and panic attacks. I think some of it was brought on by her condition. For instance, she probably heard sounds that we did not; sounds that were uncomfortable for her. She never liked Walmart or very large department stores. I think it was because of the sounds of the air vents and things that our ears tune out. And yet certain sounds soothed her like none other. She really enjoyed the sound of water sprinkling coming from a fish aquarium. In fact, she got a fish tank for Christmas.
After several go-rounds with in-home speech therapy, we finally got her into an elementary-school program that has worked wonders for her speaking ability and comprehension.
She needs alot of one-on-one attention, just to be able to keep up with her peers. Her mom and I are overworked as it is with household and home-schooling duties, so this program was a God-send!
We could not have succeeded if it were not for God blessing us. He sent us people who could give good advice and encouragement. He also gave us patience for the times when the answers were not coming and the pressure to make decisions was great.
This is when you find out if your faith is real. Can it keep you going when you want to give up?
We still have many surgeries to look forward to. Doctors want to open up her ears and possible create a prosthetic look-alike or create something from her own skin and cartilage. They want to try and make her look more normal and improve her natural hearing, if possible. This will be happening soon.
Mercy still hates doctors, nurses, and any place that even slightly resembles a
doctor's office, like banks, hair salons and other places with waiting rooms.
Time (and faith) will tell us if she will ever be a "normal" kid. Sometimes I wonder if I ever really want her to be like that.
I love her just the way she is, as God made her and gave her to us!
Our Experience With Hearing Loss Caused By Microtia, Part 1
On November 11, 2005, my wife Amanda gave birth to our 3rd child, Mercy Elizabeth. The delivery was by C-section because of a breech presentation, but otherwise, everything appeared normal. When I was allowed to go visit our baby while she was under the heating lamp, I noticed something wasn't quite right. I saw that her ears were very small and that she had no visible ear canal openings.
This condition is called microtia (see link), which is very rare. It happens in about 1 of every 10,000 births. She has it in both ears, rarer still.
We were subsequently sent to a host of medical specialists... the poor girl was poked and prodded everywhere and subject to a battery of tests. They also found out she had a slight heart murmur.
Anyway, after months of running around, we learned that Mercy has a treatable condition; there is no known cause, it was just a mutation. It just happens, one
doctor told us.
Testing showed that her hearing appeared to be reduced by about 50%. We noticed early on that she didn't pay attention to far off sounds like trains and birds whistling. One could easily walk up to her from behind without her noticing.
Mercy would need special hearing aids, called bone-conduction hearing-aids. These would not fit inside her ears like regular aids since she lacked those openings.
This condition is called microtia (see link), which is very rare. It happens in about 1 of every 10,000 births. She has it in both ears, rarer still.
We were subsequently sent to a host of medical specialists... the poor girl was poked and prodded everywhere and subject to a battery of tests. They also found out she had a slight heart murmur.
Anyway, after months of running around, we learned that Mercy has a treatable condition; there is no known cause, it was just a mutation. It just happens, one
doctor told us.
Testing showed that her hearing appeared to be reduced by about 50%. We noticed early on that she didn't pay attention to far off sounds like trains and birds whistling. One could easily walk up to her from behind without her noticing.
Mercy would need special hearing aids, called bone-conduction hearing-aids. These would not fit inside her ears like regular aids since she lacked those openings.
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