My little boy. His first hearing test.

I’ve said many times here and there that my hearing loss condition runs in my family.

Today began by being very challenging. I’ve talked previously about needing to take my oldest child, my five year old son, to get his hearing checked and today I did that. My cochlear implant audiologist’s office was a bit steep on the price for a hearing test, and because my son isn’t medically insured, I took him to the audiologist that I used many years ago when I got my hearing aids, long before my cochlear implant surgery.

I don’t think anything really prepared me for walking into that audiologist’s office today. I had told myself time and again that it was a simple test, it was likely that my son has zero hearing loss, and there wasn’t anything to be nervous about. And I wasn’t much until I stepped into that office.

My son had no hesitation. The minute we walked through the door, his eyes zoned in on some large leggo blocks, and the rest is simply history, for him at least.

I have been very careful the last few days, only telling him twice that he was having a hearing test, and very intentionally making it out to be no big deal. The last thing I want to do is create an anxiety or fear about it in him. The only thing I made a big deal about was that this wasn’t a “shot” doctor. He was good to go after he knew that he wouldn’t be getting a shot. Gotta love kids.

I had both my son and my little girl with me today. And I have no idea why I didn’t think to have someone go with me. Who cares about help with the kids? I definitely could have used the emotional support. My son walked in front of me and I held my little girl’s hand as we walked into the room that housed the sound-proof room for the hearing test. Audiology equipment sat at a little table, just under the window looking into the sound-proof room, and I felt like time stood still for a few moments.

I realized I hadn’t done this before. Because the times I’d been in this room before, it was all about me. Not about my little boy.

The audiologist checked my son’s ears a moment, asked me a few questions about why I wanted to get his hearing checked, then we both ushered my son into the sound-proof room, indicating for him to sit in it’s only chair. The audiologist placed headphones on his little ears, showed him how to push the button on the little remote when he heard a sound, then she stepped out. She closed the thick padded door and my heart nearly broke in two.

I forced myself to remain calm. This was only a test. No big deal. But I paced back and forth and wiped my teary eyes a dozen times as the audiologist made notes across my little boy’s first audiogram. She finished, and I held my breath.

She turned and looked at me, and it took me a second or two to really process what she said. My little boy heard just as well as any five year old boy does.

I couldn’t decide whether to cry, jump up and down, or give her a huge bear hug. I didn’t really do anything, just kinda stood there with my head spinning as she turned and opened the big door for my boy to exit the enclosed room. I smiled and told him how very proud I was of him sitting still and taking the test. He just shrugged like it was no big deal. Just like I’d hoped he would.

I let out a great big sigh of relief as we exited the office today. Thank God for such a great day. Fabulous day. With such good news.

The trouble with insurance…

I’ve always been a very private person. I don’t know if it’s because of being late-deafened or if it’s just who I am, but it’s always been really easy for me to keep any and all matters of the heart very close to my chest.

I’ve had difficulties deciding if I should post this blog, simply because I feel it’s a private matter. But if I’m going to be honest about this journey I’m on with my deafness (and now hearing with a cochlear implant), then I know I should shove this out in the open. I certainly don’t post this for myself, but because I want any struggling deaf or cochlear candidate who reads this to know that I struggle right along with you. You’re not alone. We’re all pushing through life best we can, and it’s so so important that we keep a positive outlook and believe God for the best.

I know, I know, you probably wonder what kind of struggles can I possibly have now that I’m no longer facing deafness but hearing with my cochlear implant. I’m right there with ya. I thought my world would be nearly perfect after my activation, but apparently this world just isn’t perfect. Who knew?

This week I decided that it’s time to stop dragging my feet and to send my oldest child, my son now 5 years old, to get his hearing checked. Because my late-deafness can be hereditary (although I do pray constantly my kids didn’t get it and won’t ever), I want to be a well-informed parent and send him yearly for a hearing check-up now that he’s reached school age. Some schools do give basic tests, but I’d much rather send my son to someone who knows my medical history, my audiologist.

Before spending a bundle on a specialist, I have sought out medical insurance for both my kids.

I don’t work at the moment. My college degree is for a field that requires customer service, and because I’m not confidant in making phone calls and have to say so in job interviews, I have yet to be hired in my line of work. I was once employed by a company years ago, but when I stopped being able to hear over the phone (or to talk on a radio to guys on a construction site), I lost my job. Yeah I know that lawsuits are an option, but I’m not one to use that route.

After losing my job years ago, it was after that that I looked into the cochlear implant. I couldn’t get insurance through my husbands work, so I tried purchasing medical insurance privately, only to be denied by company after company because I was already a candidate for cochlear. And no one wanted to pay for that. I eventually found a government program to sponsor my cochlear implant surgery, which I’m ever grateful for, and sometime after I was approved to have insurance through Medicare.

How does that affect my kids?

This week I called the Social Security Administration, who funds my disability Medicare, and asked how to get my children insurance. I was told that while they can’t get Medicare, I could apply to get them Children’s Medicaid or CHIP, both government programs geared toward children. I applied to both programs, but it turns out that my husband makes just slightly over the income limit. CHIP recommended that I call the Social Security Administration to find out where to get insurance.

Obviously that brought me full circle.

I got a bright idea, remembering that neither of my children have any medical conditions. Being that, why would they not qualify for me to purchase private insurance? I looked around online, not finding a private company that listed quotes for only the children. The companies wanted me or my husband on the plan too. Since my husband’s work pays for his insurance, and I have Medicare, that didn’t really work for us. So I randomly picked a private company to call and see if they did have plans for children only, it just might not be on their website.

When I called the insurance company, they told me they didn’t service Texas, but gave me the number to the Texas Department of Insurance. When I talked to the lady at the Department of Insurance, it was there that I got the answer I sought. Apparently in Texas, private insurance companies cannot sell insurance to children only. A guardian or parent must be on the plan as well.

Basically it boils down to that at the moment I haven’t found a way to buy insurance or use a government program to get them insurance either. What does that mean? I have no idea!

I can’t say that I have thought much about the long term with this issue. I’m not going to worry, because I know that inevitably everything can work out the same way it all worked out when I had so much trouble getting my own insurance. Worrying isn’t going to help me out any. What I can do for today is call my audiologist and see if they can give me some sort of discounted price to check my son. If they want to charge me the full couple hundred that I know it can be, then I know there is an audiologist in my metroplex that does non-profit work for children, and he might help me out.

So there’s my dilemma, laid out before this blogosphere. I think everyone knows our government isn’t perfect, so there’s no need for a big long rant. I rather just remind us all that it’s so important that we not only pray for our nation and it’s leaders, but to do more and to educate ourselves about our government and do what we can to vote the best leaders in place and voice our opinions on changes we need made.

Ending on a positive note, I will say that I was pretty intimidated by the amount of phone work I had to do through this situation. I was fortunate to talk with people who all spoke very clearly, and did have several times when I had to ask someone to repeat themselves or slow down. All in all, I’d say I’m doing pretty good on this recovery road to hearing!

The Big Decision Part 3

(Read Part 1 or Part 2)

There are several reasons I initially didn’t want to consider a cochlear implant (CI). I will admit that most of my issues with CI were based on facts from a decade before. But beyond that, the first and foremost reason that I didn’t want a CI was that everything that I had read told me that any hearing I had left in my ear would be destroyed upon having surgery for a CI.

When CI was recommended that day by my ENT, my thoughts were I’m only 27. To me, that’s pretty young. What if five years from now, doctors can do some sort of surgery or procedure that doesn’t kill any hearing I have left? I mean, if they destroy my hearing with a CI and it doesn’t work or I don’t like it, there’s absolutely no going back. Do I want that?

And I didn’t want that. Who would?

The other reason I didn’t want CI stemmed from the fact that I knew someone who had a CI. And from what I could tell, that person communicated about as well as I could if I had just got some hearing aids at that time. Granted, the person I knew who had a CI had the surgery done a decade before I sat in my ENT’s office that day.

Raise you’re hand if you know that technology advances nearly as fast as we breathe?!

Raise your hand if you realize that a CI is a piece of technology?!

Let’s just say both of my hands were in my lap the day I was first recommended to get CI, because I was completely oblivious to all that. And honestly? I’m very glad I chose that day to adamantly tell them no. I’d never worn any type of hearing aid in my 27 years, and I see now that it was a big step for me. The type of hearing aid I would have to wear was over the ear and a hey-look-at-me-and-my-huge-hearing-aid-so-obviously-I-can’t-hear-very-well type of thing. To someone who has worn hearing aids for years, it’s no big deal. It’s like wearing your glasses to the store on a day you don’t feel like sticking in contacts. But for me it was like wearing glasses for the very first time in public. It was a big deal.

The ENT and Audiologist I saw that day (who are not the same ones I now see for my CI) clearly thought I was a little mental in wanting only hearing aids, but I was ok with that.

I was eventually sent by DARS to an Audiologist on my side of town to be fitted for hearing aids the following summer, in 2008.

I distinctly remember walking out of the Audiologist office the day I got my first set of hearing aids. The freeway ran right in front of the office, and it was amazing to me to be able to hear cars driving by. I would later drive to a local store and jump back about three feet when I was assaulted with the noise of the doors sliding open. It was overwhelming to me.

Hearing aids helped me much more than I had expected. They really did. Looking back, I realize how much my life would have changed for the better if I’d got them after that first hearing test as an adult. Sure, they didn’t bring back every bit of hearing, but the fact that they helped at all meant that my life was better because of it. You can bet that I had a very big moment when I realized I should have said years prior to that, Who cares if anybody knows I can’t hear? I don’t! I need help, and these hearing aids will help! But me, being me, cared too much what people thought.

Let that be a lesson for you. Sometimes when we care too much about what other people think, we miss out on a better life than we could have if we just didn’t let it bother us. Something I still need to hear. Even today.

The Big Decision. Part 2.

(Part 1 can be viewed by clicking here)

When I went into my first ENT’s office in October of 2007, my mission was clear in my head. I couldn’t hear my fifteen month old son’s laughter anymore, and I couldn’t hear my newborn daughter cry. I wanted hearing aids.

I had been told some years before that hearing aids would likely never help me. But let me tell you now, that when you’ve gone from about a thirty percent hearing loss to about seventy percent? Most anything is going to help at that point.

Here’s a not-so-funny story. When I went into the ENT’s office, the first thing they wanted to do was to try and figure out the reason for my hearing loss. I know my loss is hereditary, and I know my dad had been seeing doctors for decades relating to his own hearing loss, with no cures to be found, so I was mostly just humoring the ENT. The ENT ordered an MRI and bloodwork to be done, hoping for some sign or clue as a way to fix my issue medically. Because my daughter was only two weeks old at this point, I had been told to wait another week or so before having my blood drawn for the bloodwork, but was informed that the MRI was safe to do immediately.

So my mom and I head to the lab a few days later, intent on having my MRI done. We sat in the waiting room for a while, and when my name was called, I passed my two week old daughter to my mom and promptly headed to a small dressing room. An MRI is done by using a magnetic field, so I was told to take everything off that had any sort of metal on it, and given a hospital gown. Earring, rings, headbands, or any type of metal is strictly forbidden when having this test done. And after removing all my metal pieces, and dressing as they had indicated, the nurse comes back to my dressing room and escorts me to the MRI room. I was stuck inside the little capsule-like area for about an hour, trying not to hyperventilate from claustrophobia, and before I knew it, the test was over. I re-dressed and immediately was able to return to the waiting room and hold my daughter again.

And here’s the kicker. The nurse followed me back to the waiting room, and spoke with my mom and I for a few moments after the test. She informed us that they’d send the results to my ENT and that it would be ok for me to resume nursing after forty-eight hours.

I said, “Uhh, what’s that?!”

Yeah. No nursing after an MRI for 48 straight hours. It must have been one teeny tiny detail that my doctor apparently forgot to inform me of, which is weird considering that I had my two week old with me when I went to the ENT’s office. I was one very unhappy mother! Fortunately for me, I had plenty breastmilk stored already. Unfortunate for my daughter because she’d rather have starved herself than drink from a bottle. I am happy to report that she’s reached a strapping three and a half years of age, and has nearly healed from this very traumatic experience (although I still blame this incident as the reason for her fear of abandonment if I am more than ten feet away from her).

Back to the bigger picture.

Even after the bloodwork, and in addition to the MRI, the ENT could find no reason as to why my hearing loss was progressive. We knew what caused the hearing loss, and that it’s a sensorineural hearing loss, dealing with the nerves within the ear and their lack of performance so to speak, but we’ve never figured out why those nerves stop working. It’s obviously a gene passed from parent to child, sometimes genes that manifest later in life, in our teens, while other times those genes lay dormant and never cause hearing loss at all. Even if I did submit myself to be tested genetically, there’s never a guarantee that anything can be fixed. We’d learn the name of the gene maybe, but we wouldn’t have a way to medically fix it yet.

My ENT’s office told me that my best option would be a cochlear implant, and strongly recommended that I consider it.

But I was adamant.

I didn’t want one.

The Big Decision. Part 1.

Most everyone that I am acquainted with knows that I was, at some point, a person with hearing loss. Heck, there’s a lot of people that I don’t know who are aware that I had a hearing loss. But when I started blogging over a year ago, I had already made a decision. I would definitely have a Cochlear Implant surgery, and I had even, 6 months prior to this, begun the very long process of awaiting approval for it through a state program.

What most people don’t know about me, is that making the decision to get a Cochlear Implant was not an easy one. It was actually one of the most difficult decisions I’ve ever made.

And this is the story about my decision.

I grew up hearing perfectly normal, as most of you know by now. I don’t know at what age that my hearing began going downhill, as gradual as it did, but I was very protective of it. I started realizing in my early twenties that people around me, ones who knew me well, started slowly making accommodations for me. They stopped calling out to me to grab my attention, but rather started tapping my shoulder or waving their hand so that I looked at them. My immediate family and in-laws all knew my dad, and I know that they recognized the same hearing loss signs in me.

The weird thing was that I didn’t. Or rather, I refused to. For reasons that delve into my own spiritual life, reasons that I won’t go into right now, I’ll just say that I unrealistically thought that if I didn’t talk about my hearing loss, that it wouldn’t be there. That it would just go away. And it took a very long time for me to understand that, by refusing to deal with the situation, I caused a lot of unintentional stress on myself, my husband, and our whole family.

For years, my mom had gently prodded me to go get my hearing checked, to at least consider hearing aids, and I just adamantly refused to do so. I will admit that part of me was still growing up. I still knew everything (although once I hit 25, I realized that I really didn’t know it all) and I was adverse to doing something that my parents were telling me to do. Know now that anyone who gives an adamant opinion that something should be done one way, means that I will find a way to do it differently. It’s kinda funny, yes, but it’s also something that’s just ingrained in me, and I’ve had to work very hard over the years to change my attitude behind that.

I remember going to a local Jone’s Hearing Center for my first hearing test as an adult. I was only about twenty-one or so. The first thing they did was give me a hearing test. I honestly feel sorry for the guy who did my test. After I came out of the testing room, he sat me and my husband down at a table, and showed us the chart that showed my results. Any control I had over my emotions went out the window with the first glance of that chart. By the time he told me I had a severe hearing loss and that hearing aids would only help minimally (in his opinion), I had completely given up on controlling the tears. The man stepped out of the office and my husband just rubbed my back as I broke down in uncontrollable emotions. I didn’t get hearing aids that day or any day following. I couldn’t even bring myself to think about my loss for some years after, much less deal with a hearing aid that I was told wouldn’t really help.

Skip a while down the road to when I had both my children, some six years later. I’ve written before about the time I finally realized I couldn’t hear my son laugh anymore. It was the final straw for me, and my hearing loss. I knew at that point, that whatever I had to do to hear even the slightest bit better, I would do it. There’s something to be said about a mother and her natural instinct to want to protect her kids. And I knew without doubt that it was my first purpose behind the motivation I suddenly acquired.

This time around, I went a different direction. Instead of walking into Jones Hearing Center, I went to an ENT (Ear/Nose/Throat) doctor. In case you’re in the dark here, I had previously only been to an Audiologist for that first hearing test. An Audiologist is not a medical doctor. A person gets a doctorate in Audiology, which is a technical field, not a medical field. An ENT, however, is a medically licensed practitioner who deals with hearing loss, in conjunction with other related issues. Don’t ask me why I didn’t go to the ENT the first time. My only thought is that I was just not as educated in the matter before then.

At the ENT’s office, I was sent out for an MRI and bloodwork, in a failing attempt to find a medical solution as to why I had a hearing loss. At twenty-seven years of age, I returned to the doctor’s office to hear the results of the tests, and it was then that I was finally diagnosed with the worst classification of hearing loss. They told me I had what is termed Profound Hearing Loss.

Stay tuned for more tomorrow!