Eight months of HOH mommy-hood--- draft that never posted

My baby girl is turning eight months old tomorrow. I can't believe it! Her personality is just starting to shine through. Her grins and giggles that expose her two itty-bitty teeth melt my heart. Along my brief but ongoing journey in motherhood, I've learned so much about myself. Some of what I have learned thus far pertains directly to my hearing loss. Ella has never been a huge crier, fortunately. However, when Ella was about 4 months old the volume and intensity of her cry changed dramatically in a period that seemed overnight. With that came a whole new irritant for my aided ears. Her cry made my hearing aids attempt to compress the sound. See, the higher frequencies are the ones I can't hear unaided. My hearing aids try to amplify these loud enough for me to hear them. However, if the sound present is a high frequency but already pretty loud on it's own, the hearing aid amplifies it but quickly responds and tries to compress it to a level that prevents further damage to my ears. This results in a very loud, distorted noise that I can't accurately describe. It's like static but far more loud and annoying. This phenomenon is not new. Never before, though, has the source of such an irritant been someone I love as much as my baby.

18 months later as a HOH mom

A busy 18 months of mommyhood has kept me away from this blog. I thought it was time to revisit :-). My greatest challenge and greatest joy are one and the same: my daughter Ella. While everything about first-time mommyhood is brand-new and often terrifying, I am now seeing Ella's personality blossom and know that I was simply born to be her mom. My hearing loss has added an additional hurdle at times to mommyhood thus far. Most notably, I had thought that a baby monitor was super necessary and I even researched about and purchased one that vibrated for those times when I would be aid-less. It became very apparent after the first couple weeks of use that it was not going to work for my purposes. In order to hear it, I would have to have the volume at a level that my husband couldn't tolerate. He said he could hear her breathing and it was interrupting his sleep. So, slowly, I began to trust my hubby to be my monitor for those rare times when I wouldn't hear Ella. Remarkably, despite my hearing loss, I somehow rarely miss her cries. It sounds cliche but it's as if I gained a sixth sense when I became a mother. I had some issues, however, with the volume of baby cries and noises. I suffer from hyperacusis which has always made some noises particularly bothersome but until I became a parent I could take steps to eradicate those noises that bothered me. In the case of loud, crying baby, that was not an option. I had to find new ways of coping to my noise sensitivity which took some adjustment. I have become a huge fan of my hearing aids' mute button. Previous models of aids I have owned had required the complete removal of my aids from my ear and then the removal of the battery for a complete off mode. These new aids (as in the ones I have had for about 3 years now) have a mute setting so a push of a button turns them both off. I didn't realize how crazy invaluable something like this option was until Ella arrived and even later, when she began screaming and screeching just for fun :-). As I had imagined, wearing hearing aids while administering a bath has gradually become impossible. Ella has taken to splashing water as she's entered toddlerhood. I have to remove the hearing aids and generally just keep them out through the entire bedtime routine. It actually makes me enjoy the cuddling more when I use all my other senses and read to her without my aids on. I can't really explain what I mean. I just allow myself to tune out the world at the end of each day with her. There was a brief period where Ella "discovered" Mommy's aids in her ears. This was quite the challenge. There's nothing like the tenacity of a curious baby. First, her little hands coming near my aids would cause feedback or loud squealing from the speakers. It would bother me tremendously as it always has but it would also startle her, initially. Slowly, she became kind of fascinated with the cause and effect of this little game. She also desperately wanted to pull them out to inspect them. Fortunately, with patience that I mustered up from somewhere deep within, I got used to the game just in time for her to realize the aids are always there and lose interest altogether. I have had a severe anxiety associated with my hearing aid batteries and Ella. I still do, even more so now that she can easily reach, climb and rummage through the majority of our house and belongings. I am trying to find good hiding places for my aids in my car and house. I have stopped carrying any in my purse as my purse is now one of Ella's favorite things to empty. I think the chance of Ella swallowing my aid batteries will be a huge source of fear for me probably until she's moved out of the house. No joke. Ella and I took a series of baby sign language classes when she was an infant. She now utilizes several signs and recognizes dozens more. She really enjoys it and I do, too. Her speech is usually clear when she is saying actual words but I know that signs do fill in the gap when I can't hear what she's saying the first or second time. I do wonder how much of my insistence on sign was in someway selfish but it's working for us. I had a really sensitive moment with a friend of a friend recently. I was just having one of those insane weeks everyone has from time to time where it seems everything is going wrong and nothing is working the way it should. I was particularly raw going into our conversation about our insecurities as moms. Hard-of-hearing or not, moms have plenty of them and they are often very similar. Then, I brought up my insecurity about being a hard-of-hearing mom. How my disability will affect Ella? Will it frustrate her or make her feel different than her peers? My friend's friend said something so simple and she said it with such an honest heart. She immediately told me that she thought my hearing loss would be an asset for Ella. I was already in need of a good cry so naturally, that is what finally got the tears flowing. I hope she's right. I hope it for my daughter's sake. I think the more I accept my loss the more it has the potential to be an asset for my daughter. And, for that reason, I soldier on and continue to embrace it for what is, a small part of who I am as both a person and a mother.

Hard of Hearing Mom-hood

It's been some time since I last wrote. I'm now 30+ weeks pregnant with a baby girl to be named Ella. It's been a relatively easy and uncomplicated pregnancy. I feel tremendously blessed. I'm so excited that I rarely give much thought to what it will be like to be a hard of hearing mother but when I do, I try to focus less on my frustration that I have hearing loss and more on how I can adapt as a mother. Fortunately, with a little research, I've discovered some baby monitors have a vibrating feature. According to some threads I have seen online, a model by Graco appears to be the go-to for hearing-impaired moms. I think this will be a life-saver particularly at night when I'm unaided. Of course, I could turn the volume up to the highest level on the monitor to help wake me but I have to consider my hearing hubby trying to sleep next to me. I also live in a condo complex and no doubt my neighbors won't appreciate hearing Ella in stereo. So, the vibrating option is fabulous. I'll be placing it right by my head and hopefully, we'll all be happy with the result. I am really eager to see this plan in action and whether it really is as useful as I expect. What's been really interesting, too, has been reading up on other HOH moms experiences. For example, it's a relief to read posts by the Lipreading Mom. If blogger Shanna Groves, a severely hard of hearing mom can successfully raise her three kids and all with a sense of humor, then it gives me additional hope I can do the same as Ella's mom. As a member of the national Hearing Loss Association of America, which is a great resource for all ages facing hearing loss, I get their monthly magazine. Before I was even trying to get pregnancy I read a poignant article written by the wife of a severely hard of hearing man. They have a family. One of the stories she relayed to readers hit home. Apparently, they both attended their child's parent-teacher conference. There, the teacher jokingly (albeit, her words may have stung, despite the joking tone) told them that meeting the HOH father made her understand why their son spoke so loudly. I do have this concern for Ella. She will undoubtedly need to learn how to be patient with her hard-of-hearing mom when I don't respond right away to her voice or when I'll ask her to repeat herself more than once. But, eventually, she'll probably adapt as she won't know any different. What may be a bigger challenge for her will be to understand intellectually that Mom is different than everyone else and has different communication needs. I do wonder if she'll be a loud kid. As a youngster will she not be able identify when it's necessary for her to adjust her behavior based on a specific situation or the company she's in? My greatest hope for her is that she never feels different because she has a hard-of-hearing mom. That may be a little unrealistic but a girl can wish. I have had some ringing in my ears since I got pregnant and suspect a particularly bad few days of fullness in the ears was in fact another episode of AIED. I chose not to go to my audiologist and ENT because of the pregnancy. My reasoning: if it was AIED the intertympanic steroid shots would be even more uncomfortable than while I wasn't pregnant and there could always be a potential for passing trace amounts of steroids to Ella. But, I do wonder, post-pregnancy, how my AIED will progress and how it might impact my relationship with my daughter. The fluctuation in my hearing will no doubt confuse her. With each episode, I've become more aware of the signs and my reaction but that doesn't mean I don't still get agitated while in the middle of one. I hope I can continue to learn how adapt to these episodes so as not to let my frustration about them infiltrate my parenting. Ella won't understand that Mom is agitated not by her but something else beyond our control. I've also been considering the smaller things I might need to do differently once Ella arrives. Right now, I have a tendency to toss batteries in my purse, my car and other random locations. While Ella's little, I will have to hide my hearing aid batteries to avoid the risk of ingestion. I think it might also be necessary to take my hearing aids out when I bathe her as a baby so her potential splashing doesn't break Mommy's aids. I think it's really important that I also get Ella and I involved in the baby sign language classes that have become so popular. It will no doubt be a very important tool for us. Until she's able to enunciate clearly and she's using a clear confident tone that Mommy can hear more easily, I think we'll need a fallback way of communicating. Sign will bridge the gap, I suspect. I will always encourage her to use her words too but it may be helpful for us both to sign and talk at the same time so we can understand each other. I am looking forward to the gift of motherhood and conquering my hearing loss in new uncharted ways. I simply can't wait to meet my munchkin!

Intertympanic Shots: 3 down, 1 more to go

Last week, I got the news that my latest AIED tinnitus episode had caused a 20 dB loss at 1000 Hz in my left ear. I'm only down to 30 dB in that frequency which is categorized as a mild hearing loss. What's noteworthy, though, is that I was hearing at 0 dB at 1000 Hz in the left ear just 10 months ago. Knowing this, I had my audiologist take a look at my audiograms collectively since I became her patient. It was clear to us both that my once good ear had been nosediving since January (post oral steroids treatment which as I note in previous posts was totally unsuccessful and caused severe insomnia, mood swings and depression.) My ENT was confident that intertympanic steroid shots would not have the same systemic effect and could be more effective in combating my tinnitus and hearing loss during an actual episode. With that, I had my first shot on Nov. 2nd.

The whole process takes less than a minute but as the injection goes in it causes intense vertigo, which is well-documented so they inject you lying down. Post-injection it feels like your ear is full and, at least after the first injection, my ear burned like someone had boxed me in the ear. In order for the inner ear to absorb the prednisone, a patient has to lie on their opposite side and wait for gravity to take effect. It's weird because your ear feels as if it's acting as a suction cup. You hear some weird suction-type sounds, too. Perhaps the most awkward thing about the post-injection period: you have to lay there for 30 minutes without talking or swallowing. Translation: spit into tissues for a half hour so as not to swallow your own saliva.

The whole experience the first time around made me wary about continuing with the three other injections the doctor prescribed. Fortunately, shot #2 five days later was alot less painful. And, finally, about a day after that injection, I awoke to no tinnitus for the first time in a week. With my spirits lifted, I had my third shot done yesterday. Again, it was less uncomfortable than it had been in the previous two visits. My final shot is scheduled for Monday.

It will be intriguing to see if my hearing rebounds at all from the treatment. As far as I am concerned, I've noticed it's been easier to chat on the phone than it was during the episode and I'm overall not as tired because I don't feel like I'm struggling like I was. Should there still be some permanent loss sustained by this latest episode, though, I will once again be that annoying patient who advocates for herself and ask for another hearing aid adjustment.

It's been about 8 months or so now since I've gotten my Exelias and I now fully understand and value the fact that getting the best amplification possible totally transforms my life and affects everything from my energy level to my mood. As long as my ears can benefit from amplification, I will be that patient that's constantly fine-tuning her aids to fit her fluctuating loss. Sometimes it feels like I am running after this hearing loss trying desperately to catch up to it and be the best hearing person I can be. I can't say that it's not exhausting sometimes but at least I have finally embraced it. There's a peace about it now that I never had. I hope it keeps.

Tinnitus, I wish I could say I hardly knew ya!

My doctors think I have a vague illness called autoimmune disease of the inner ear. AIED includes asymmetrical, progressive hearing loss and can cause tinnitus and vertigo. Fortunately, I am vertigo-free but I do get tinnitus. A couple months ago I had my worst bout of tinnitus (in my case, my tinnitus is sustained ringing in my ear, sometimes pulsating, sometimes not). The episode lasted a full week and I sustained a 10 dB loss in my left ear at 1000 Hz. That loss wasn't enough to cause too much alarm, fortunately. Now, just when I was hoping that episode was just a weird phenomenon, I'm on day 3 of my latest bout of tinnitus. I am headed to the ENT and audiologist this afternoon. My ENT has told me that each bout needs to be analyzed and my hearing tested. If there is a 20 dB decrease in any frequency, an inter-tympanic shot of prednisone might be worthwhile. IT shots mean a shot into my eardrum. Prednisone is a steroid. Never thought I would be "pumping up" my ears. But, apparently, if a prednisone IT shot is warranted, it can often stop an episode and possibly restore any hearing lost during that episode. I am a little squeamish at the idea but now that I'm on day 3 of this latest episode, I can honestly say I am DYING for some relief. I'll post the result soon.

Hearing should be a right not a privilege

This is perhaps the most emotional and inspiring video I have ever seen. To me, it showcases the power of good hearing for those of us who lack it. It also makes me so grateful to live in a time when people like her and I can benefit from technological advances in audiology. But, most importantly, it is proof to me that hearing is a right, not a privilege. Not every deaf person wants to become a hearing person. Deaf culture is alive and well. While I myself am not a member of the Deaf community, I got a taste of the pride that community has while taking an ASL class in college. For those who do want to hear though, hearing MUST be a right NOT a privilege. It's widely accepted that every American who has problems with their vision has the right to get the medical care and equipment necessary to see clearly. Why does the same not hold true for the hearing impaired?

Not long ago, when I discovered my hearing loss had progressed, that I was badly under-aided and I needed new hearing equipment, I learned my insurance would not pick up any portion of the tab for my aids. I was furious at the news. I remembered my parents telling me when I was younger that they had to pay out-of-pocket for my BTE (behind-the-ear). Later, I also remember that a new insurance plan my parents had acquired in my teens DID cover aids. That policy allowed me to get my first pricey ITE (in-the-ear). As a youngster, I didn't consider the lack of insurance coverage of hearing equipment an injustice. I didn't fully grasp the expense or how insurance coverage or lack thereof impacted my family. I was fortunate that circumstances allowed me to have the best technology and care.

At 27 years old, though, I needed two new aids (and power aids at that) for the first time in my adult life. I felt so ostracized by "the system." One of the many reasons why I feel blessed for my short stint in audiology school: they pointed me in the direction of the Vocational Rehabilitation program. At first, the idea of asking the state to subsidize my hearing equipment made me incredibly uncomfortable. It took months of struggling with the idea, while reluctantly filling out the paperwork and going to the necessary meetings, before I realized that it was my right to ask for help. If my insurance company was failing me, it was my right to seek other ways to cover the cost of my $6,000 aids. The Voc Rehab program recognized that, too, and that the aids were my tools to gain and retain employment. After approval, it was discovered that Cigna, my insurance company, had recently altered their coverage for hearing aids. Now, they were covering $2,500 in hearing equipment annually! It was a heartening, small step in the right direction. Voc Rehab picked up the remainder of my bill and after months of bureaucracy, I was fit with my Phonak Exelias. The elation I experienced that first day with MY new aids (I had been loaned others, off and on, while waiting for the ones I now call my own) parallels Sarah Churman's in the above video.

In Sarah Churman's case, her implant cost $30,000 just for one ear. She went on Ellen eight days after the above video was shot to tell her story. Her insurance company didn't cover her procedure at all. Her mother-in-law, realizing how important hearing was to Sarah and her young family, selflessly cashed in her retirement fund and paid for Sarah's procedure. Ellen DeGeneres, who I adore, recognized the awful injustice--that a woman could essentially be priced out of a basic right--and worked out an amazing solution to the Churmans' financial situation. She got the company who makes Sarah's implant to agree to reimburse Sarah the $30,000 for her first implant and gave Sarah an additional $30,000 so she could have the procedure done on the other ear. It was a remarkable act of kindness. It also highlighted the growing understanding within the hearing community of the need for change. It gives me hope that one day aids, cochlear implants and medical procedures aimed at restoring one's hearing will no longer be viewed as vanity items but truly medically necessary tools to restore the right to hear to anyone who seeks it. Go Ellen and go Sarah!

Here's the segment on Ellen. Warning: Grab a hanky before viewing!
A Deaf Woman Who Can Finally Hear Meets Ellen

High Energy Thanks to Phonak

I have had a tough couple of weeks with my first pregnancy, miscarriage and D & C. I'm better and hopeful that the next pregnancy, whenever we're blessed again, will be a successful one. But, in the middle of it all, I have fallen in love... with my new Phonak iCom and TVLink. $300 and a little gizmo later and I am full of energy I hardly remember having since my hearing loss took a nosedive.

The iCom and I had a short rendezvous with a FM transmitter in grad school. I wasn't a massive fan of the FM transmitter in those brief few weeks. It really only helped in the classroom but any dynamic situations led to some serious sensory overload. I think my good hearing for in low frequencies in both ears and mids in the left made it just too loud. I did love the iCom, however, when I linked it with my loaned Exelias and my smartphone for hands-free phone calls in the car.

Every time I was without great hearing aids before grad school and using the speakerphone behind the wheel, I struggled to hear and was always fearful of getting pulled over by the cops for breaking the hands-free law. I returned to that frustration when I returned my loaner aids and went back to my own obsolete aids. As soon as I got my Exelias with the bluetooth capability from Voc Rehab, I dreamily hoped to return to easy hands-free calls but worried about the expense. Thankfully, my hubby, whose continued support and patience warms my heart and boggles my mind, recognized how important an iCom would be to my sanity and safety. My audiologist gave me a great deal on the iCom and the TVLink combo and I placed my order.

Now, I think I've fallen more in love with the TVLink than the iCom phone option. The little charging station for the iCom doubles as a wireless link for easy TV viewership when I plug it into either TV in my home. I can now miraculously hear every word on the TV through a signal sent directly to my aids. I can even have the TV on mute and hear the TV through my aids... perfect for late night or early morning viewing!

I am a different person with even more boosted energy than I had once I got properly aided. This little device was the missing link between me and effortless hearing. I feel like I have been released from the loose grips of my hearing loss... I am hardly if ever limited by what I can't hear. Of course, I still occasionally miss something my hearing friends and family might hear but it's not nearly as frustrating to communicate. I don't feel like I am being held back or holding back others in almost all day-to-day situations. The future looks bright!

Here's info on the Phonak iCom and TVLink I am gushing about:


http://www.phonak.com/com/b2c/en/products/accessories/communication/icom/overview.html