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SJ Latest Vocab Explosion

This was one of my most recent updates about SJ’s progress in her cochlear implant journey, which was posted August 12, 2014.

“I feel like we have been at a stand still over the summer. I always keep a log of new words and phrases that I notice SJ saying and the last time I did an entry was the two months ago. Maybe some of it’s because I have been too busy to notice, or maybe it’s because she was on vacation and out of school so she is just plateauing. Or perhaps this would be a slower time anyway. These burst of vocabulary breakthroughs do tend to happen in waves.”

I tried to stay positive, but when I know SJ has so much catching up to do it is hard to see so little progress. Fortunately we did have another wave of new words come last month. She was suddenly communicating so much I could barely keep up.

One day in September I dropped Z off at Sunday School, but since there are no classes for my youngest children I just take them to have donuts with my mom (their Me’me’). I told my mom that was one time I was a little grateful that SJ couldn’t talk too much because if she told her brother he was missing donut time he’d be upset.

 It wasn’t but a week later that we were going to do our donut tradition and SJ piped up “Donuts with Me’Me’?” I couldn’t believe my ears. She wasn’t copying something I said, she just had the language to say it herself and I was blown away. Although it was also a little comical since I had been trying to keep our donut outing a secret!

Another time shortly after that I was trying to convince her to wear a headband.

She used to wear headbands all the time to keep her Cochlear Implants on until one day she decided she didn’t like them anymore. So now we keep the CI’s on her ears with special tape. It’s technically used for wigs and toupees. Anyway, I prefer the headbands for various reasons so I thought I would see if she would switch back, but she clearly told me

“I don’t like headband. I like tape.”

This is a big breakthrough for her to be able to express her desires so clearly. It certainly alleviates a lot of frustration for both of us.

I have just a few more stories for you, and for me actually because I want to look back this time next year and remember what her sentences were like.

One night SJ brought me a package of Oreos and with a sheepish grin she lifts up a finger and says “One?” Then she says “Not two. Not five.” As she shakes her head. How can I resist? I tell her okay then she immediately asks “One for baby Ezie?” Again I was just amazed at how much she was able to communicate and it certainly is hard to turn down requests when she does!

  These last two milestones were SO exciting for me and I will never forget them. You know how you can’t really see your children grow, but sometimes you see growth? Well, maybe that doesn’t make sense, but that is what these were like.

J is in school a lot so SJ always asks “where daddy?” and I tell her “Daddy is at school” One day she didn’t even ask where daddy was because she knew the routine by now, she simply said “Daddy with teacher?” I turned around wondering if I heard her right. Did you say “Daddy with teacher?” and she said yeah. Again I was stunned, because she had put the pieces together. I never said daddy was with a teacher, but she knew what school was and that there were teachers and that daddy was probably at school.

A similar breakthrough happened when J was calling my name from the other room and I heard SJ say “Mommy?” and he said “Yes, I need mommy. Can you get her for me?” She said “Okay”(which usually sounds like oh-hey) and I heard her little feet pitter patter down the hall. I was excited to see what she would do because this wasn’t the norm at all. I knew for sure she wasn’t going to say Mommy, daddy wants you. but as she approached the doorway she declared with confidence. “Mommy, daddy talking.” I said, Okay! Thank you! and squeezed her so tight she was probably wondering what in the world the big deal was.

There have been lots of little connections happening. Phrases like “I need help pajamas” and “That mommy’s coffee” and “I will hold it”. Her teachers and therapist are much better at explaining exactly what all of the milestones are and the new goals of syntax, phenomes and receptive learning. All I know is that things are clicking in a new and exciting way. She has gone from just learning vocabulary, labeling, and reciting to actually understanding and communicating her thoughts and needs. We still have a long way to go and there are many times we just flat out can’t understand her, but I am happy with the recent progress and it just makes me more excited to see what comes next!

By |2023-06-12T06:26:43+00:00November 19, 2014|Hearing Loss, My Life, Our Hearing Loss Journey|4 Comments
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A Progress Report

SJ’s last day of school was on Tuesday. She goes back again on Monday for summer school though. Speaking of which, I have a praise report about that. Last year we lived outside of Ohio so we had to do a great big fundraiser to collect the $800 she would need for the program. You may remember that. This year since we moved we were supposed to get funding through our counties developmental disability services. Turns out they ran out of money. I didn’t even know that could happen. Panic struck, but I just did not feel led to try to get all of the money on my own like I did last year. The school helped us apply for some grants and today I got an email saying it was all covered through the Building Blocks 4 Kids foundation. I will share more about that later.

We went through some tough times here recently with SJ not wanting to wear her cochlear implant at home. I am fine with her taking a break her and there, but this was starting to happen far too often. I talked to the team at her school during one of my parent education sessions and I hate to say I shot down their ideas left and right, but I did. I wasn’t trying to be difficult, it’s just that I had tried it all before. Then her teacher mentioned perhaps decorating the implants or letting her pick out her bows and head band. She knew that SJ enjoys dressing herself and showcasing her own sense of style. I told them I would give it a try. Every set of implants comes with a cover that you can put on the outside to add some flair. Long story short, we’ve been alternating covers and it has helped a ton! She isn’t wearing the headbands as often and that can be a hassle, because her ears are so small and the devices so big, but I am just glad she’s wearing them. 
I feel very encouraged as we close the chapter of this school year. This is the first time she was able to start and finish a program. After her diagnosis we went from doctor to doctor and therapist to therapist. There was a lot of change and adjustment in that season. Now that we have settled on this school for her we are staying. It’s like I said about not moving from our apartment, it’s the slightest sense of stability. I like that. 
As I look back at where we were last year tears come to my eyes. We were still working on the idea of listening and responding to her name which is something I don’t even think about anymore. At the end of school last year she had about a dozen words, now she has hundreds. I can’t keep track, and every time I turn around I hear her say things I didn’t realize the she new like “basket, shovel, scoot back, tomorrow…” The latest sentences she has said completely on her own that have taken me off guard are
Daddy HAS keys
I want CHOCOLATE milk
I NEED help WITH socks
SNACK FOR LATER
Mommy sit RIGHT HERE
SJ PICK ONE book 
TWO WHITE car ONE BLACK car 
I DON’T like chicken NASTY (compared to “no chicken” or just a complete melt downa couple months ago)
I capitalized some of the words that she recently added.  
She is doing great, but I have never once thought that it was all happening quicker than I expected. I don’t take any of her progress for granted, but it feels like a “slowly but surely” process. I am so glad that she has ended this school year on a good note though. It’s encouraging and I need all the motivation I can get to cross the bridge of the summer. 

By |2023-06-12T06:27:26+00:00June 5, 2014|Our Hearing Loss Journey|1 Comment
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A Recap of the First Year with Cochlear Implants

It’s been a year since SJ had her cochlear implant activated. There have been a lot of highs and lows, but I feel like FINALLY, we are getting some momentum and everyday SJ is saying new words and responding with a new level of understanding. In order to document what’s happened this past year I wanted to do a little recap. And even though SJ’s situation is not typical, especially compared to a baby diagnosed at infancy, I still hope that this time line could be informative for parents of deaf children researching what to expect. Here is the progress from SJ first 12 months of hearing beginning at age 2 1/2.

1. On November 21, 2012 SJ cochlear implant was activated. They call this the hearing birthday. It was not the party I was expecting. She barely responded and she did not want to wear it. I tried to be positive and I didn’t even expound too much about my disappointment on my blog, but I actually cried a lot after we left the audiologist that day.


What may look insignificance was a huge milestone for SJ. It was exactly 6 months a

4. February was a big month for SJ because even though the surgery was scheduled the audiologist was not on board (because she is, in her words, conservative about these things) and we had to write to her respectfully disagreeing with her decision. We had run-ins with insurance as well, but following the advice of SJ’s ENT, teachers, therapists, and our own intuition, we pushed through until we could get 
was going to be best for our daughter and had the surgery approved. 
After all that we geared up for surgery, and it was successful.

At this point I was able to see a little more response from SJ in terms of hearing, but not much and her school was concerned because their professional diagnosis showed that she was not even detecting speech sounds and needed a new mapping. And they were right!

5. At the end of February SJ was activated on her left side and hearing bilaterally for the fist time. Despite the direct requests from the school and ENT, SJ’s audiologist still hesitated to add much volume to SJ’s implants (again she was self proclaimed “conservative”). In the meantime SJ’s was healing well and we were becoming more comfortable with the cochlear implant devices.

6. The school volunteered to have their audiologist take over with SJ’s mapping and it was like NIGHT AND DAY! It is so important to have the right mapping (in layman’s terms this is basically the setting/volume, it’s a complicated process). When SJ had her CI’s remapped in March she was really hearing most sounds for the first time and it was amazing to watch. She even said her first word, “up”

     

7 & 8. SJ continued to grow leaps and bounds once she had the proper mapping she was consistently turning to environmental sounds and to her name. She started saying uh-oh, more, and some animal noises on her own and many other words with prompting.

9. We raised money for SJ to be able to go to summer school and her vocabulary continued to grow to up to 20 words. Some days were better than others as far as communication related frustration and cooperation with even wearing the implants, but we were excited about the upcoming school year where SJ would be going full time.

10. On SJ’s first day of school we had to pick her up early to have a CT scan at the children’s hospital because her right implant was causing her pain. The scans came back fine, but apparently she had some shifting that is not traumatic, but does take a few weeks to heal before the scar tissue sets the device back into place. This was scary, but praise the Lord everything turned out fine.

 
11. At this point between IEP meetings, a research study group, and observations. I felt  like things were at a stand still again. It’s hard to see your child be so far behind her peers, but luckily I now know that it gets better.

12. In October SJ had a breakthrough. She can now refers to several people by name and she knows over 60 words. Everyday I hear her saying new things and I really, Really, REALLy believe that the worst is behind us this time.

*I am going to get a better video up soon! One where she is talking on her own without being fed all the answers! 

By |2023-06-12T06:22:57+00:00November 22, 2013|Cochlear Implants, Hearing Loss, Our Hearing Loss Journey, Uncategorized|3 Comments
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A Little Cochlear Panic Attack

I haven’t done an update in a while reporting how far along SJ is with new words and hearing milestones. It’s been a bit discouraging lately. I have had a hard time getting her to keep her CI’s on. She does fine at church and school, but anywhere else it is an everyday battle. Then add to that the set back of her having the pain on the right side (which is gone now, praise God) and then on Sunday one of her processors looked like it was broken and then there are the times that they are lost and it’s always stressful! Those little flashing magnetic “earrings”are by far those valuable things we own monetarily.

 In fact even if you added up all of our assets it still wouldn’t be close to the worth of her processors.

Imagine how I felt yesterday when the kids were playing on the balcony and SJ had her headband off. Then I saw her looking through the cracks of wood down to the balcony below us.

There are some spaces between the planks and she thought it would be fun to drop her barrette, headband, and each processor individually through the cracks. AND it appeared that one of them landed in a bowl of water, which meant I had 30 minutes before that thing became worthless. To say I freaked out is probably an understatement. I don’t remember exactly how I reacted because that whole moment felt like it happened in another dimension.

The first thing I needed to do was just simply ask our downstairs neighbors if I could retrieve it. So I bolted down the stairs and started knocking and then banging on the door. No answer. So I went back upstairs and tried to think like Tom Cruise’s character in Mission Impossible. Could I climb down, not without dying. Would a broom reach, not even close, I tried. Think, think, think! Call the landlords’s? I felt uneasy about our downstairs neighbors. I think I can safely explain without them finding out because the chances of them reading a mom blog, especially mine, are slim to none. Anyway, the downstairs neighbors have a Pit Bull, his name is Ozzie and if the dog could talk he would probably curse like Ozzie just like his owners do. None the less I had no time to loose. I scribbled out a note along with my phone number and I went back downstairs to tape it to the door. The door has a fuzzy black wreath hanging on it along with an eyeball welcome mat. 
I know that some people decorate early for Halloween, but this might be year round decor for them. I snapped a pic with my phone because after my relentless knocking I knew I wasn’t bothering anybody.

Finally when I returned up to my apartment I had a stroke of genius and I remembered a giant paper clip that I could probably make a hook out of and we had some string from the recent pinata festivities so I had to basically make a fishing line. Because the processors are magnetic I was able to lower the metal hook down through the crack and it stuck right to the first one which was in the water.

Getting it back through the crack without knocking it off was the most nerve wrecking, but it worked. That was the biggest relief. Getting the second one was harder because it wasn’t a straight shot, but eventually after jerking the string up and down to cause the clip to land in different spaces I got it and at that point I was on a roll so I went for the hairband too. The kids were crowded around me watching as if it were a scene from the Sandlot (remember “I’ve got get that ball back. You don’t understand”). Except instead of a ball signed by Babe Ruth it was some cochlear Implants and instead of The Beast it was Ozzie (who luckily was not on the porch).

I told J the day that I have less than 3 major crisis/emergencies will be a good day and for the past week or so I’ve had some really bad days. All is well that end well.

By |2023-06-12T06:23:15+00:00September 6, 2013|My Life, Our Hearing Loss Journey|4 Comments
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I Have Meniere’s Disease?

I have so much that I have wanted to blog about, but life has so rudely interrupted my attempts. Vertigo has no manners I tell you. 

The first time I ever experienced vertigo was about 10 years ago. I was hanging out at my friend’s pool and suddenly I couldn’t even walk straight. I was so dizzy I had to be carried to the car and it was there that the nausea turned into vomiting. No fun at all. I could tell that the source of the imbalance was coming from my ear which had been ringing and what I could only describe as a stuffy, cloudy feeling. It eventually got bad enough that I drug my uninsured self to an ear doctor. I pretty much wasted $400 for them to do some tests and have a Doctor say “Yep, you don’t hear as well on the left side. As far as the ringing goes some people like to use music as a way to distract from the irritation that intensifies in silence.”

 My ear issues have come and gone since then. I mostly just deal with it, but over the past couple years it seems to have gotten worse. I have been embarrassed to talk about it because I don’t like to seem like a hypochondriac. I feel like it could look like a desperate attempt to compete with my daughter’s deafness. The truth is though, I know I don’t hear well at all from the left side. I realized just how bad when I had ear buds in and I swore the left side wasn’t working… until I put it in my right ear. After doing some online research I diagnosed myself with Tinnitus (this was about two months ago). Tinnitus basically just means ringing in the ears.

On Friday I had another rare episode of vertigo where it felt like my eyes were scanning the room diagonally and rapidly, but it was all involuntary. Up down. Up down. Up down. The room was spinning except I couldn’t see behind me so to me spinning isn’t even the right word. I started freaking out a little bit and told Z to get my phone. I hunched forward and when it ceased I said “that was trippy” which is a word I never use. Then I was able to get to a plastic bag just in time to loose my lunch (via the upchuck). This happened again on Monday (in a Kroger parking lot) and Tuesday. Each episode was usually followed by covering my face with a  wet rag and always falling asleep.

After a little more online research about tinnitus and vertigo I found one article after another that had my symptoms written out with complete accuracy. 

  • Dizziness or vertigo, often with nausea and vomiting
  • Ringing or roaring in the ear (tinnitus)
  • Fluctuating hearing loss
  • A feeling of fullness or pressure in the ear

and there was a name for it 

Ménière’s disease

The Mayo Clinic says a diagnosis of Meniere’s disease requires:
  • Two spontaneous episodes of vertigo, each lasting 20 minutes or longer
  • Hearing loss verified by a hearing test on at least one occasion
  • Tinnitus or aural fullness
  • Exclusion of other known causes of these sensory problems

That’s it. That’s me exactly. On top of that it can first appear in your early twenties (like for me), the vertigo is followed by episodes of fatigue (check), and most enlightening to me was how the hearing loss fluctuates in the early stages, but eventually becomes permanent (so I am not crazy). Some of the things I read were kind of scary like no cure and no known cause. But in some cases it is just considered “mildly irritating”, which is how I feel most of the time (ha ha). I just laid out all of the worst aspects of it over the course 10 years. This probably makes it sound terrifying, but most of the time it’s just a mildly irritating frustration that I have learned to deal with. 

So that is why my blog has been a little quiet lately. Well, that is one of probably 50 reasons why. There is a lot happening right now. But as far as my newly diagnosed disease, I am first of all just glad to have a name for it and an idea of what is going on. And even though medicine may not be able to cure it I know the great physician, the ultimate healer, my savior Jesus Christ and I have peace in that.  

By |2023-06-12T06:30:19+00:00May 24, 2013|Our Hearing Loss Journey, Uncategorized|3 Comments
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Our Decision To Implant

 Little did I know that by having a deaf daughter I would be thrown into a controversial cultural land mine. I love watching the show Switched at Birth on ABC Family because I get my ASL fix. In the latest episode the character Bay starts going to a Deaf school. In this scene she is with her deaf friend so it looks like everything is hunky dory, but she ends up being an outcast as a hearing person in deaf school.
  
The next show focuses even more on her being bullied. The show does a great job of portraying the ongoing struggle between the deaf and hearing world. The premise of the show however is about how we can all come together and be a family embracing the differences. 
I’ve actually gotten emails from some people in the deaf community that told me I would be making the wrong decision to give SJ a cochlear implant. Days after she was implanted a deaf friend saw my status updates about her surgery on Facebook and said

 “I hope she will be happy with her CI… I hope that is what she wants instead of a decision you are forcing on her… I will be there for her if she needs me..” 

Yeah, my two year old daughter who cannot communicate is recovering from a serious surgery and I get this message. That was almost 3 months ago and here we are ready to give her a second one. I would like to use my blog as a platform to address the reason why. There are a lot of reasons and I have shared them on this blog before, but I’d like to share with you a letter that keeps it all in perspective for me.

In April we first found out for the first time that there was even a remote possibility that SJ might be deaf. That month we took a trip to Texas because I was photographing a wedding. It just so happens that while I was visiting my inlaw’s church there was a women signing during worship. God has a way with “just so happens”  doesn’t he? I spoke with this women who is fluent in ASL and teaches sign language full time. We chatted and exchanged contact info. After reading my blog and keeping up with me on Facebook she sent me this message. I asked her for permission to share her words because it has been a lifeline for me throughout the ups and downs and I think there may be other parents in my situation that would benefit from her wisdom as well. This is what she sent (emphasis added)- 

I just read the update on your blog and I want to tell you I’m so proud of how well you are adjusting to all of this. I know it’s incredibly overwhelming – all the tests, information, opinions, and decisions can seem like a whirlwind when you’re trying to make the best decisions and time is of the essence. 
I just want to encourage you in trusting yourself and God to know what to do. 
He is leading you to the people you need to help you through this transition. You have a perfect, beautiful, amazing little girl and God has incredible plans for her! I have been & will continue to pray for you & your family. You are doing everything right and Sedona is so blessed to have you as a mom! It sounds like she is a perfect candidate for the CI and is still so young where the success rate is amazing. 
Continue to teach her sign, help her learn to speak & read lips, teach her in whatever method is best for her and for your family, but above all celebrate her as an amazing child unique and special as I know you do everyday. Don’t listen to the extremists who might try to tell you there is one right way to raise a happy & successful deaf child.
She is going to flourish and do great things. Give her every opportunity you can, in whatever way that seems right for her. Allow her to embrace her deafness as part of who she is and not see it as a defect that needs to be “cured”. Even people who gain perfect speech and “hearing” with a cochlear implant are still deaf. I know you all have a big journey ahead with lots of changes and adapting to do but Sedona is going to do awesome! I know a lot of deaf people, oral, signing, intelligible speech, no speech, ASL users, and signed exact English users, young, old and inbetween and they are all happy and well adjusted people. Deafness is a part of her but it doesn’t define who she is.
Thanks for posting about your personal experiences. You have a great support system and a lot of prayer on your side.
As the big steps and challenges come, don’t let them weigh you down. Celebrate the simple things and trust God to get you through the hurdles.
Lots of prayers! Keep us posted!
By |2023-06-12T06:30:50+00:00January 18, 2013|Cochlear Implants, Our Hearing Loss Journey, Uncategorized|5 Comments
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Processing Deafness

Just to let everyone know right up front, we are doing just fine. SJ is great, we are still learning to sign and speech therapy is underway. I just wanted to be transparent about the reality of all the complicated aspects of this process.

The moment I knew there was potential hearing loss for SJ I started researching. I’ve tried to learn all about the deaf community through videos, websites, reading material, and talking to anyone I could find that was involved in the world of hearing loss. I learned that they have their own culture, defined as a group of people that share a language, values, rules for behavior, and traditions. I read a lot of fascinating and encouraging things that made me want to delve deeper into this culture, but some of the articles I read made me feel like, as a hearing person, I was an unwanted trespasser. I didn’t understand why some deaf communities seemed so exclusive and defensive. Then I learned about the oppression that started taking place in the 1800’s when deaf people were forced to learn ways of oral communication and they had to fight to preserve their language, which was almost completely wiped away by the idea that deafness was a burden that needed to be removed from society. At this time it was also believed that no deaf person should intermarry in order to try to eradicate the problem. I also learned how up until recently, including in my mothers generation, many deaf people have been misdiagnosed as mentally challenged and therefor isolated from the opportunity to communicate or become social. It’s no wonder some deaf people feel like they have to fight against the hearing world to preserve their identity.

When I was told that my daughter had severe to profound hearing loss, I didn’t know where that placed her on the hearing loss spectrum. I tried to look up information, but my results were inconclusive therefor I announced to the world that SJ was hard of hearing and not deaf. Since then her team of experts, doctors, therapists etc. have said otherwise. SJ is deaf and I just didn’t know what to call it.

I read one article that said;
 In hearing culture, the terms used to describe deaf people have to do with their hearing loss. The term “hard of hearing” is better than “deaf.” Hard of Hearing people are generally regarded as being easier to communicate with and fit in better with hearing people. In Deaf culture, though, the terms are quite the opposite. There is one label for people who are part of Deaf culture…Deaf. 

Not to be defensive, but I did not use the term hard of hearing because I thought it was better. I am not ashamed to have a deaf daughter, misinformed maybe, but the only reason I didn’t call SJ deaf is because no one told me! I was afraid to offend the deaf community. I feared that by labeling SJ deaf we could potentially get kicked out of a party that we were never actually invited to. When you learn about deaf culture you learn about deaf pride, which is a beautiful thing, but it can be intimidating when it’s new to you. 

As a mother of a deaf two year old I am responsible for the decisions in her life at this time. The more I have learned about this whole hearing loss process the more I feel like I am in-between two worlds. I am trying VERY hard to embrace ASL, but it never fails that I am breaking rules about sign names, and grammar, and the idea that maybe the cochlear implant is not from the devil. 

The ironic thing is, I’ve always wanted to adopt. For me personally my heart has ached for the many minority babies in America that need a home. I have always felt like we would some day be a biracial family, I have even referenced this in previous blog posts. I never imagined though that I would have a biological child that was a minority and who could identify with a culture and a history completely different than my own. It’s one thing to adopt a child of another ethnicity, but wouldn’t it be strange if you a birthed a baby and the Doctor said “It’s a boy… and he’s Hungarian! Now here is a book of rules on Hungarian culture and this is how you need to raise him.” That’s kind of what it feels like. Different, but I don’t know what else to compare it to.

Now I could write another 5 paragraphs of disclaimers because I worry that all of this could be taken the wrong way, but instead let me just end with the true nature of my heart. Community and culture are vital to our makeup, but so is individuality. God has given me the gift of motherhood, and as long as he continues to bless me with children whether they be biological, adopted, black, white, deaf, or Hungarian my husband and I will joyful take up the challenge to raise them to be men and women of honor and integrity. There are good days and bad days, but this truth is deeply rooted in my heart.

By |2023-06-12T06:31:28+00:00July 17, 2012|Hearing Loss, Our Hearing Loss Journey, Uncategorized|3 Comments
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Learning to Communicate

Finding out you have a child that can’t hear is a little bit of a shock, but as with most situations in parenting you have only a moment to let it sink in before you have to respond. The day SJ’s was diagnosed we were sent home with quite a bit of reading material about being the parent of a child that is deaf or hard or hearing. That alone is a little surreal. I feel like parenthood has thrown me a few curve balls already, but nothing that required a team of experts and a stack parenting handbooks. 

  

The most important thing for me at this point is to give my daughter a way to communicate. SJ is still at a good age to pick up speech quickly, but the ideal window for acquiring a first language is half closed already. The doctors and therapist can only work so quickly. No matter how concerned they are and how much they encourage a sense of urgency it seems like the standard protocol in this field is “hurry up and wait”. I can sit around and wait for the Doctors, but the thing is, I am pretty stubborn.  I am ready to communicate with my daughter now and I know that sign language is realistic way to do that. So I have been devouring every bit of information I can in this area. In less than 2 months I have acquired a 250 word vocabulary in ASL. SJ has gone from knowing 5 words to 9 which might not seem like a big deal, but those are just the words that she is producing on her own. She repeats and understand a lot more than that. It’s a big step forward in minimizing frustration and educating her about the world around her. 

For example, we went to the zoo and beforehand I learned every zoo animal sign I could think of because  she wasn’t going to hear me say elephant or rhinoceros, but she could see me sign and start identifying that these amazing creatures have names! Here is a little video of her signing shoe, which is basically thumping your fist together at the thumbs.

I have so much to say about sign language, which I will be sure to post more on in the near future. When SJ gains oral communication she may decide to drop signing all together or our whole family could end up bilingual. Either way I’m hooked. I know I am just a beginner when it comes to this beautiful language, but I am grateful for what it has already done for me by enabling me to communicate with my daughter. It’s funny, I’ve been vocal my whole life (just ask my family), but for this season that I am in it’s like ASL is what has given me a voice.

By |2023-06-12T06:31:57+00:00May 27, 2012|ASL, Our Hearing Loss Journey, Uncategorized|3 Comments
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What This Means (as far as I know)

For those visiting from the links  I sent out you, may be interested in some of these previous blog posts. 

It began with a shocking visit to the ENT. 

Then we had to wait a month to learn more.

 Finally last week we received test results.

I know that there are probably a lot of questions and this affects anyone that is involved with my family at all, so I want to be as informative as possible even if I do feel ill-equipped to explain or understand exactly what is going on. Feel free to skim through the information below and if you have any questions or advice for me at all don’t hesitate to leave a comment here, or contact me on Facebook www.facebook.com/natobuch

1. What type of hearing loss does she have? SJ has had 2 separate tests to rule out the potential that her hearing loss is from something like fluid or an ear infection. What she has is considered sensorineural and to put it simply, it’s the scary kind. Sensorineural hearing loss (SNHL) occurs when there is damage to the inner ear, or to the nerve pathways from the inner ear to the brain. 
This is considered to be permanent hearing loss. SNHL reduces the ability to hear faint sounds and speech.

2. The biggest question most people have (including myself) is how did this happen? The answer to this question is no fun. We don’t know. We may never know. We may end up having some genetic testing done, which could potentially explain a lot. There are plenty of cases of genetic deafness where deafness shows up for the first time in the family history and at least half of all childhood hearing loss is due to hereditary causes.

3. Another big question is was she born with it? I am already seeing a pattern here in that there are no easy answers. We never had a newborn screening done, but it certainly looks as though she could hear (at least to some degree) at one time. 

4. So then could she continue to loose her hearing? I emailed this question to our audiologist, so I will give you her exact answer. 
Right now, it’s unclear if her hearing loss is considered”progressive” because it’s the first time we’ve had a documented hearing loss.  We will continue to monitor it so we can answer that
question.  Genetic testing may also answer this question as well. 

5. Is she deaf? Ah, another question with a complicated answer. In one of the pamphlets I was given deafness is “a loss of hearing, which is severe enough to make it hard for a person to understand speech through hearing.” So this would describe my daughter, but she has enough of her natural hearing available to amplify through hearing aids in order to understand speech. At this point I understand that SJ is considered hard of hearing. 

6. Will she learn sign language or talk? Both. The audiologist is aware of the signing that we have been doing with her and she encouraged it. I have been told that she will be able to learn English and I look forward to this since that is a big part of our lives (obviously), but I am also very excited about learning to sign. I break it down to 3 reasons we’ve considered this option.

 1. SJ at this point has no way of hearing or talking to us other than sign, so for now I’ll take what I can get. 2. Even with the hearing aids there are certain times she would need to take them out or the potential that they could malfunction and I would not want to have her communication with us completely dependent on the use of aids. 3. Question #5 was complicated because deafness and hard of hearing go hand and hand and they aren’t as far apart as some would think. SJ can probably relate to a deaf child as much as she would with a hearing one, if not more. If she wants to be involved in the deaf community I embrace that and ASL would make it easier for all of us to communicate in this area. 

7. What can she hear? Right now with no hearing aids SJ hears at about 70 dB and below. We were given an audiogram for her that shows that she can not pick up any language at all. She can hear really loud machinery or music, but not like we do. Even fireworks or an airplane would be muffled and subdued to her. That is why she does not get startled. I asked the Doctor what percentage of hearing loss she has and although they don’t like to break it down in that way, she would say she has a 90% loss. This was the part of the appointment where my jaw hit the floor. 

8.  What about the cochlear implant? I brought this up with my audiologist, not because I was interested in it, but because I knew it was all the rage when it comes to hearing and that other people would ask. For those that have never heard of a cochlear implant, it is surgically implanted hearing device, a “bionic ear” of sorts, that will pick up sounds and transform them into electric impulses. While this procedure has done wonders for many people it is also extremely invasive. At this point no cochlear implant for SJ. I am not saying that it won’t come up again, but our audiologist doesn’t feel like it applies to our situation at all at this time.

9. What happens next? I am supposed to be contacted by several different specialist and have been informed of the urgency in getting the ball rolling with SJ in this very critical age of learning to communicate. She should have hearing aids by the end of the month and has already been fitted for the pink Otticon hearing aids. It is going to take a team of people  to help our little cupcake and this team includes; The pediatrician, ENT specialist, Audiologist, Speech therapist/speech-language pathologist, and of course friends and family. 

10. Is there anything we need ? We have such a great support system, it is incredible. Financially everything so far has been covered by CHIP. It’s the first time in our lives we have ever had any governmental assistance and the timing couldn’t be any better. If we were on our own in all this we would be sunk, but God is in control. I would LOVE to have help learning sign language and I know several interpreters but they are all out of state and that does make it a little more difficult. We can always use prayer. Specifically that the Lord would bring all the right people into place. We still need to find a decent pediatrician. Other than that, the thing SJ needs is just for all of us to be chill. I am preaching to myself here, but as far as she knows nothing is wrong. It’s not like I can explain it to her anyway. She is just a typical two year old that runs around, watches nick jr., throws tantrums, and has learned to adapt. She still needs people to talk to her, even right now while she can’t hear. If you know any signs at all feel free to use them. I am the worst at feeling self conscious about it in public because I feel inadequate, but I am working on getting over what other people think. 

Whew, so that is all the information overload I have for you today. On behalf of SJ and our family, for anyone who has taken the time to care, I say

  

By |2023-06-12T06:32:07+00:00May 8, 2012|Our Hearing Loss Journey, Uncategorized|7 Comments
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