Adoption, Medical Issues

Turning the Page of a Book to a New Chapter

Turning the Page of a Book to a New Chapter

Turning the Page of a Book to a New Chapter

Ethiopian Adoption

My baby came to us when he was 5 yrs old, after a long, intense battle to bring him to America. Being a child of color, more aged, and a boy, his odds were against him ever getting adopted. See, little black girls turn into sweet gorgeous black women. Little black boys turn out to be thugs, murderers, etc. There is a sad stigma, and that does not mean it is just in America. There is racism in the country of Ethiopia as well. Suppose a male child is three or younger and “caramel” in color. He is an excellent child to be adopted. If a male child is four or above and darker, that is a lot of odds.

How can one look at that face, those eyes, that smile and say he is going to be ANYTHING but a child of the King and a warrior for His kingdom? This baby, this baby, I cannot even. My heart bursts with love, pride, gratitude, and thankfulness for what the Lord did in our story. I seriously cannot even.

Discovering He Was Deaf

We did not know he was deaf for almost a year, LOL. He was learning the language and how to live in a family and acclimate to the USA. That was his only job. To learn to be loved, to know he is safe, to help him with his loss and grief of not being with his family and beautiful country. He was, at one point, trilingual. Oh, and he was LOUD. He could speak and worked hard at his broken English until he mastered it. After almost 6 yrs, he still says a few words wonky, LOL.

“I No Hear In That Ear.”

On his birthday, my mom calls to sing to all the kids. She always calls in the morning. I answered the phone, and I knew it was her, so I went ahead and called him upstairs and handed him the phone. Now, remember, he is an Ethiopian who had only been home for eight mths. I put the phone up to his right ear so he could listen to her sing. When I did, he said, “mommy…I no hear in that ear.” I laughed and said he was a funny boy, and I raised the phone to his right ear again. He said, “Mommy, I no hear in that ear.”

Understandably, he switched ears and smiled as she sang. He is a man of little words, so as he was grinning (he thought she could see his approval), he handed me the phone. I was sitting there, with my mouth opening, looking at him like he had an eyeball that had just sprouted up on his forehead. I held the phone and could hear my mom speak, but all I could say was, “what do you mean you can’t hear in that ear?” He said, “I no hear in that ear.” I could’ve caught flies with my mouth.

I’m Sorry, But What???!!

I put the phone to my ear and said, “Martha….he says he can’t hear out his right ear…I gotta go and figure out what the heck he is talking about.” We got off the phone, and I looked him square and said: “WHAT THE HECK DO YOU MEAN YOU CAN’T HEAR OUT OF THAT EAR?” He took his hands and clapped them on my cheeks. J pulled my face, nose to nose with his face, and said: “MOM, I NO HEAR OUT OF THAT EAR.” I asked if he heard out of that ear in Ethiopia. He waved his hand like it was nothing, saying, “No. I no hear in that ear in Ethiopia (that is how he pronounced it).”

Bumfuzzled

I think I sat there staring at him for 30 minutes. I’d plug one ear and talk. He could hear me. I would plug the other ear and talk. He could hear me. I did not get it. At all. I turned all the fans on, made him turn around, and whispered. He heard me. I am stumped. In a last-ditch effort to understand what was happening, I got in the van with him, turned up the radio, lowered all the windows, and whispered. Guess what? He heard me. Either he was insane, or I was insane.

ENT Part 1

I took him to an ENT. We did hearing tests. He was in the “soundproof” booth, and the lady said some words, and he repeated them while one or the other ear was plugged. He did it. She said he was fine. In another moment, “I am such a bad parent because if he is hard of hearing in that ear, I didn’t know. Also, I didn’t do anything about his inability to hear. The audiologist said he was fine, but I want a second opinion from a friend. She is good at what she does and she is free. I will leave this alone. If she tells me that he is fine, I will assume I am nuts. Also, I will assume he is nuts. We are all just nuts.” Yes, that is the long run-on sentence in my head.

ENT Part 2

I headed to see my friend Susan Brown. She did her initial stuff and then put him back in the booth. I sat in the booth with her. This time was different. She said things, but she covered her mouth. When she did that, we discovered that he was stone-cold deaf in his right ear. I didn’t realize that he was reading my lip and everyone else’s lips. Most people are deaf from either their outer ear to their eardrum OR from the eardrum to their brain. J is deaf from the external eardrum to the brain. He has all the mechanics of a “good” ear….he is just deaf. We are guessing he was born this way, which explains SO much.

ENT Part 3

J was pretty stoked when I took him from Susan to the NEW ENT. I told him we were going to see Dr. Jones. With his wide eyes, he said: “We are going to see DR JONES?” I said yes, we are. He is going to check your ears. I asked why he was looking at me like that, and he said, “Dr. Jones? As in Indiana Jones?” I smiled and said, “No, Dr. Shawn Jones.” Let down.

Stupid Question

As we talked, I asked Dr. Jones if this could be hereditary? He said it could be, and why do I ask. I explained to him that my mom was born without a bone in her ear and that she was deaf. I told him that she had surgery, and they placed a metal plate there; now she can hear. At that moment, the dr was staring at me, the nurse was staring at me, and J was silent. I couldn’t figure out the silence.

Dr. Jones leaned WAY into me and said: “Brandi, is your mom black?” I said, “No. She is a little short redhead. Why are you asking me if she is black?” He smiled and said, “Brandi….your son is black.” Duh, I forgot. I don’t think about things like that, so I felt pretty stupid. After many visits, many types of hearing aids that did not work, and learning some sign language to help him in crowds, five years later, yesterday was the day we turned the page to a new chapter five years later.

ENT Part 4: Surgeon

We were in Louisville for Dr. Severtson to perform a BAHA surgery yesterday. Usually, this surgery would have a titanium screw, and in about six mths or so, once it is healed, you snap a hearing aid on behind your ear. The sound bypasses the ear canal and goes straight to the brain. The post requires A LOT of attention and maintenance. We were going to do that because the older J gets, the more it bothers him about his hearing. I get that. Our dr was recently approved to do a new type of BAHA hearing aid.

Instead of the titanium screw, he put in a magnet. This takes 2-3 mths to settle in and heal. Once that is healed, we go back to the processor. His hearing aid will also have a magnetic on it, and it will just stick to his head, behind his ear, and it does the same as the original. This is good because there is zero maintenance. You get your processor quicker. He is the first in our area to receive it, so we can hopefully help other families. More importantly, he will be able to hear out of both ears for the first time in his life. How freaking cool is that?

Recovery

The recovery is not fun. He has to keep his head wrapped for three days. Also, J cannot wash his hair for a week or so. In the end, it will be awesome, and that is what I have to remind him. I am so stinking excited. He is excited too, but he is hurting pretty good, and his incision site itches. Which is driving him bonkers. All in all, welcome to his new and improved HEARING story 🙂

 

Adoption, Medical Issues

All About Single-Sided Deafness

All About Single-Sided Deafness

All About Single-Sided Deafness

Here is the info All About Single-Sided Deafness. According to Healthy Hearing, Single-Sided Deafness is “Living in the head shadow of singlesided deafness. …Singlesided deafness (SSD) is a condition in which a person has lost hearing in one ear, while he or she may have anywhere from normal hearing to profound hearing loss in the other.”

A Small Familiarity

This is something that I have grown up with but never really understood. As you discuss it more, you find out that more people have hearing loss or are completely deaf in one ear. They have just learned to deal with it throughout their lives. Keep on reading from my “blonde” moment regarding my slight familiarity.

Bringing J Home

We met our child when he was 4. In our adoption journey, we flew to Addis Ababa, Ethiopia, and met this sweet child. It was love at first sight. There was, of course, a huge language barrier. He spoke the native language, Wolayita. Also, he was learning Amharic (the native language of most of Ethiopia). As a bonus, this teacher was teaching the kids in English.

We were in such a fog of the information overload we were experiencing that we didn’t notice much else. Our child was a typical 4 yr old child. Busy, opinionated, hungry, loving, affectionate, and full of smiles.

Fast Forward 2 Years Later

It was this child’s 6th birthday. Per tradition, my mom called to sing to him. He flew upstairs to talk to Jojo. I put the phone up to the right ear. He looked at me and said: “I no hear in that ear.” I must have just looked like I had swallowed a bug because my mouth was open, and I suddenly could not comprehend broken English.

He moved the phone to the left ear and smiled as she sang to him. I took the phone back and told my mom what he had said. We discussed it for a minute, and she told me that I needed to do more investigation. She asked if I remembered her surgery on her ear. I did remember, but I never knew what it was, so she explained it all to me again.

Our Conversation

Me: What do you mean you cannot hear in that ear?

Child: I can’t hear out of that ear.

Me: But what do you mean? Could you hear in Ethiopia?

Child: I no hear in Et-opia.

Me: I don’t understand what you are saying.

Child: Put both of this child’s hands on my cheeks and brought my face closer to this child’s face, and he spoke slowly. Mom. I. No. Hear. In. That. Ear.

Then he casually walked away.

Over the Course of the Day

I would sneak up on him and try to whisper in this child’s ear to catch the “deafness.” I had no idea what SSD was. I started making phone calls. We got a hearing test done with my friend Susan Brown at Murray State.

She confirmed that he was deaf in one ear, but we needed a referral to see the extent of that. We took her results and gave them to our pediatrician (who said this child’s ears were perfectly healthy and fine). I insisted on a referral to Dr. Shawn Jones, and they did that for me, though they didn’t think it was necessary.

Seeing Dr. Jones

We introduced J to the Indiana Jones movies. He was obsessed. He had the bag, hat, and whip to prove his devotion to this character. As I tried to explain to him where we were going and what the dr was going to do, I failed to mention the name of the dr. When we walked into the clinic, I told him we would see Dr. Jones soon.

Our child’s eyes were wide, and the mouth dropped. He looked at me and said: “Dr. Jones?!” Me: “Yep, you are seeing Dr. Jones today.” Child: “As in Indian Jones??!!” Me: “Uhm, no. As in. Dr. Shawn Jones.” Our child was deflated.

Our Appointment

Now, Dr. Jones and I have gone way back. He has done tube surgeries on a couple of kids and taken my tonsils out. We know each other. He is a believer, his wife is a homeschooler, and he loves to challenge and relate to each kid/person that walks into his clinic.

We giggled over J’s mistaken identity moment a few moments earlier. Then, I went on to talk about this child’s medical history (we pretty much knew nothing). I told him what Susan had said. Also, the pediatrician thought he was fine, and it was more of a selective hearing loss (aka, he is a kid).

What We Learned

We learned that you could be deaf from your outer ear to your inner ear OR from your inner ear to your brain. It is not quite as common to be deaf from your outer ear to your inner. When Dr. Jones looked into this child’s ear, he found that everything was as it should be. Nothing was missing; all bones were intact, so that is good.

He sent us to Kelli, who did another hearing test. This time, she covered her mouth as she spoke to him. That was the key. He could read lips perfectly! That is why the pediatrician thought he was fine. He had become an expert at it.

The Results Were In

When all the tests were done, we discovered that he is NOT slightly or even moderately deaf in that right ear. He is entirely, profoundly deaf from the outer ear to the brain. Although mechanically, everything is fine, he is a sonic boom type of deaf. Deaf deaf. They were so surprised that this child’s speech was so good. That at one point, he was trilingual. He had learned to compensate so well that he surprised everyone.

We Had Choices

First, we could leave it alone and let it be. Second, we could get cross hearing aids to magnify the sound in the good ear. Third, we could be the first in our region to get a magnetic BAHA hearing aid.

The cross hearing aids did not work at all. It is designed to have two hearing aids. The one in the bad ear takes the noises and slings them to the hearing aid in the good ear. Once there, it magnifies it and makes things louder. Yep, that didn’t work at all. Plus, they could not get wet. Also, he couldn’t get sweat on them. He was in sports, so he never wore them. When he did, it just irritated him.

The BAHA hearing aid can be better explained by the company we used, Sophono. There is the snap-on hearing aid, which most people get. The magnetic one was newer when we started this process. This device helped take out the maintenance of the abutment device.

What We Decided

We would leave it alone, but as he got older, we noticed more things. This child’s deafness started becoming more noticeable (or maybe we were more aware). He was still unfamiliar with life in the states, so he often darted wherever and whenever. He was in a walled area in Ethiopia, so he had freedom without fear. Here, he could very quickly get hit by a car. He often ran across the street to get a ball or see a dog.

After trying the first two less invasive options, we chose to do the BAHA. He can wear it in the rain, and he can sweat! It is rechargeable, so it removes the need to buy batteries constantly. He can do it all alone, a vast difference from the cros hearing aides.

Aging

As this child gets older, the magnetic will never need changing/replacing. He cannot have MRIs or go through metal detectors. This child’s hearing aid does not need to be replaced unless broken. We get yearly maintenance on it.

He picks and chooses when he wears it. I don’t push it. We have learned he does not like wearing it while eating (he chews too loudly) and also during worship time at church (too loud). I let him dictate when he wears it and when he doesn’t. Now, when school starts, he will have to wear it.

Alright, Alright…Here is My Moment

This is the conversation that Dr. Jones and I had while discussing J’s medical history.

Me: Can SSD be hereditary?

Dr. J: Sometimes, why do you ask?

Me: My mom was born without a bone in her ear. She was deaf on one side. She got some surgery where they put a metal plate in her ear. It bounces sound off, and now she can hear. I remember when she got it. She was sleeping in her room with the door shut. The rest of us were in the kitchen eating sandwiches. She came flying into the kitchen, crying, telling us to stop chewing loudly. Could J be missing that same bone?

Dr. J (and his nurse): Staring at me like I had a third eyeball.

Me: If this child is missing that bone, can he pass that on to biological kids? Is this a generational thing?

Crickets chirping

After a moment of silence and Dr. J continuing to let me babble on…

Dr. J: “Brandi, is your mom black?”

Me: Uhm, no…you have met her. She is a short, fiery redhead. Why?

Dr. J: Brandi, your son is black.

Me: Yep, I know that.

Moment to let me absorb his question and my answer.

Dr. J: Bursts out laughing, as does his nurse.

Me: Realizing what I just asked. Oh, well, I feel stupid.

Dr. J: You don’t distinguish between your bio and adopted kids. To answer your question, I don’t think your American mom’s ear has anything to do with your Ethiopian son’s hearing loss.

 

 

 

Medical Issues

Sensorineural Hearing Loss

Sensorineural Hearing LossSensorineural Hearing Loss

Sensorineural Hearing Loss.  On Little Man’s 7th birthday, we had a HUGE surprise in our lives.  Our day started out as a normal birthday.  At the crack of dawn, the phone rings and it is my mom. She is calling to sing to the birthday child.  This morning was no different.  As soon as the phone rings, I hear the birthday kid running 90 to nothing up the stairs to get to the phone.  They look forward to the early morning call.

As the phone rang and Little Man burst through the door, I handed Little Man the phone.  I automatically put it to his right ear because that is which ear that everyone uses to hear the person on the other end of the line.

Little Man looked at me and this is the conversation that ensued:

LM:  “I no hear in that ear.”

Me:  slightly confused, still groggy because I had just woken up “I’m sorry….what?”

LM:  “I no hear in that ear.” Bear in mind, I am still holding the phone

Me:  “I don’t understand.  What do you mean you no hear in that ear”

LM:  gets in my face and grabs my cheeks and raises his voice “MOMMY…I NO HEAR IN THAT EAR.”

Me:  “Did you hear in that ear in Ethiopia?”

LM:  “I no never hear in that ear.”

Little Man Doesn’t Miss a Beat

Little Man grabs the phone and my mother proceeds to sing.  I sit in my bed, confused.  I talk to my mom and let her know what she said and she said that I should probably go and see if this child has an ear infection.  Little Man has a HIGH threshold for pain, so this child not telling me that his ears hurt is really not that shocking.

We go and his ears are fine.

I make an appointment with the local health department to get an initial screening.  They said that Little Man seems to have some loss, go and get it checked further into but not to be too concerned.

I call and get an appointment with Murray State’s hearing clinic. I’ve worked with Susan Brown over the course of a few years, so we are familiar with each other and she is super good at what she does.

We get there and get the test done.  She just smiles and says I need to go and see an audiologist.  She said that Little Man is deaf in his right ear.

I just sit there with, I’m guessing, a puzzled look on my face.

SB:  This child is deaf in his right ear and is borderline normal in his left…but still normal.

Me:  I don’t understand.

SB:  Little Man.  Is.  Deaf.  In.  His. Right.  Ear.  And.  Little Man.  Is.  Borderline.  Normal.  In.  His.  Left.  But.  Still.  Normal.

I must have looked like a bus hit me

Me:  Define deaf.

SB:  Sonic bomb….Little Man can’t hear that.

Me:  So that’s bad, right?

SB:  yes, but this child is still “normal” in his left ear.

Me:  Is this hereditary?  My mom was born with a bone missing in her left ear and she had to have surgery to have a plate put in when she was in her 30s maybe.  Could this be the same thing?

SB:  total look of confusion on her face  Uhm, is your mom black?

Me:  Uhm, no..she is a fiery redhead.

SB:  Then how could this be hereditary?  Your son is from Africa, right?

Me:  Yes Little Man is…I don’t understand what you are asking…..then the light pops on in my head….oooooh…..gotcha.  Not hereditary..right, this child is adopted.

SB:  I thought I was missing something

Dr. Shawn Jones…Not…Indiana Jones

So, we make ANOTHER appointment with Dr. Jones.  Little Man is THRILLED that we are seeing “Dr. Jones.”  We walk in and Little Man says “You, Dr. Jones?”  Dr. Jones replies with a yes…..Little Man looks confused and Little Man said “Indiana Jones?”  Dr. J says “No, Shawn Jones.”

Burst his little bubble.

All in all, the tests were the same.  Little Man has no hearing, at all, in his right ear.  This was probably either from birth or from some illness in ET.  We tried a normal hearing aid in that ear and it did nothing.  It is hard to amplify a sound that is simply not there.  So now, we do a CROS hearing aid.  It is a regular aid in the good ear and a microphone (smaller) aids in the bad ear.  The sound hits the small aid and Bluetooth to the good ear and it is amplified.  Little Man still cannot localize sound, but this child can “hear” when something is coming.  It has worked really well for Little Man.

What Works

I do not make Little Man wear it daily, but Little Man is wearing it more times than not.  It is hard because this child isn’t supposed to “sweat” or get it wet, so we have to be very cautious.  The little aid, because it is not fitted into his ear, has a tendency to fall out, so we have gotten Little Man fitted for a fitted aid in both ears.  They are neon in color because that’s how we roll.