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Several of you have asked about an update on Adele's hearing test, which suprises me. In a good way. It still amazes me, four years later, that my blog can be considered interesting by anyone other than me-and that people actually KNOW about my life and want to take part in it. So, thank you~ for remembering and knowing those things that have been happening in my life and being interested. It is a really nice feeling.
Last Monday, ironically the week that Matt was away, Adele' had her third hearing test. Besides a momentary blip of response in her right ear, there was nothing. That little blip, though, was greeted with such enthusiasm by the screener that for a brief moment my hopes went up-only to be shattered by the sheepish response of the screener that "oh. Oops. I THOUGHT the ear was responding but the machine must have been responding to an electrical charge or something. These things happen from time to time." The poor girl felt bad about getting me all fired up just to let me down again so there are no hard feelings. It wasn't as if she was dashing my hopes on PURPOSE, she was genuinely excited when she thought that it was actual ear response.
Truth is, I had mentally prepared myself for the fact that she would fail again so I was better able to react in a positive way. I praise God for that, especially with Matt being away and all.
On the 24th, Adele' will go to a bonafide audiologist to have more extensive testing done. It is a lengthier test, will require more from her, and instead of cute little earcups being stuck to her head, little devices will be placed inside her ear. A bit more invasive and bothersome, so I am really not looking forward to it. The test though, will give us a much better idea of how "bad" her right ear is and how "good" her left ear is.
Hearing aids are incredibly expensive, especially considering Adele' would need several in her lifetime as she outgrows them. I don't know that this would be an option for us. I don't know all the options or the extent of them and I am trying not to make up hypothetical solutions until I know just exactly what might be required. So-I await this testing with anticipation (though not eager) and pray fervently that whatever the outcome, we will be given the wisdom and means to make the right decisions concerning our wee one.
She deserves the best, that's for sure.
Rebecca,
ReplyDeleteOH! How precious, makes ya just want to kiss and snuggle her. She is absolutely adorable.
The tongue thing is just to much, I loved it when each of my children did the tongue thing it is so cute, God is just amazing when you see him in his littlest creations!
Regarding hearing aid costs, my parents were able to get Federal funding to cover my first pair. Then I needed another pair when I was about 9 or 10. They paid for that out of their pockets. That pair lasted me until I was 18. Then the microphone fell in and it'd be more expensive to repair than to replace. It cost $950/each to replace my hearing aids. I'm 26 now and still wearing them. (Actually, my right one got replaced for $125, but that's a long story.)
ReplyDeleteSomething I want to share... when I was born, I was deaf in left ear, but could hear in my right. So when I got fitted for hearing aids, I only wore one. Then when I was 5, I lost the hearing in my right ear for no logical reason. My right ear is actually slightly worst than my left ear now.
But Adele's cute no matter what. :)
Thanks for your feedback Leah. I especially enjoy hearing from you. May I ask...if you lost hearing in both ears at five, do you remember sounds or hearing at all?
ReplyDeleteDid you learn sign or rely solely on hearing aids?
Was your speech impaired when you were little and were you a later talker?
Do you sign now or talk? I studied ASL (and loved it) in college and I know that some Deaf people are proud of their deafness and sometimes refuse to speak at all.
Do you have siblings? Did you feel left out at all growing up or feel like you lacked relationships with extended family?
I know these questions are dumb...but that I am on this particular subject. I know absolutely nothing about what to expect, so I do hope you don't take offense at these questions. Please don't!
We have bought 2 sets of hearing aids for our daughter so far. Yes, they are expensive, but we bought "used" aids - these were never worn by anyone, but were used as show pieces in various presentations. Once done being used as samples, they replace the covers with new ones and call them "used!"
ReplyDeleteDefinitely try to get a set (or one for the "good" ear) if it is recommended by the audiologist and ENT. If she has any hearing at all, an early hearing aid can only help Adele. The more you can maximize any hearing she has, the better she'll be able to learn to talk.
Also, check into insurance for the hearing aid. It's not that expensive and covers most incidences (like when one goes through the washer because your child has left it in their jeans pocket - ask me how I know!)
Feel free to email me if needed!
Love,
Kris
When I was 4, I remember once being able to hear sounds without either of my hearing aids on. I barely can remember it and I mustn't have been hearing too clearly, because my mom told me to go put on my hearing aid. :)
ReplyDeleteI didn't learn any sign language until I was 15 and was taking it for my language requirements for high school. My parents reasoning was that they wanted me to be able to TALK and communicate with the family. Especially since there's no other deaf family members. They knew I'd be largely left out if they let sign language become my primary form of communication.
My mom had to search high and low for the right therapist for me. She tried the local public school's "free" therapist, but was very unhappy that she couldn't sit in with me and learn what she could do at home. So, out of my parents pocket, they choose to pay for an aural (not oral) therapist. It was $60/week back in the 1980s. I can't even imagine what kind of strain that was on their budget, especially since they were one-income.
I'm the oldest of 4 kids, so my siblings were basically born into the situation and accepted it as a normal part of life. There wasn't attention issues because they didn't know that most kids DON'T go to the therapist on a weekly basis. ;)
The aural therapist sessions stopped around 10. I asked my mom if I could stop because I felt like I was wasting my time (30 minute drive, 1 hour session, 30 minutes to home) and I wasn't DOING so much speech work, but more like just fine tuning stuff. (Even as an adult, I still get fine tuning lessons... who knew that the L in salmon was silent?!)
For preschool, my mom enrolled me in the local public preschool. It went so-so. I just vaguely remember not understanding what was going on, pretty much all the time! For kindergarten, Mom was all set to enroll me in the public school. The teacher was sweet, everything was looking good... then the teacher went on maternity leave and this really mean teacher was her replacement. Since my mom tends to understate negative stuff, I'm willing to guess it was a teacher from hades!
With lots of pleading, she asked my dad if she could home school me. You gotta take yourself back to 1986 - home schooling was very "new" and lots of untested waters. At 4, almost 5 I started kindergarten at home and was successfully progressing until that spring when I lost more hearing. My parents chose to drop all schooling and focus on retraining me how to hear.
At 5, almost 6, Mom started me on kindergarten again. :) Since it went so well, she also elected to home school the other 3 siblings. All of us got our diplomas in 10th grade and moved onto community college. (Well, I did do an almost 2-year stint in an office job before college. My deafness was only an issue when there were phone calls to be made.)
The funny thing is that my parents lived about 20 minutes away from a very well known deaf school (Fremont School for the Deaf & Blind, I think). It would have been very easy for them to just drop me off every morning, pick me up in the afternoon and hope to pick up some sign language.
But I'm ever so grateful that they felt going the extra mile to make sure I learn how to speak was more important to them. Extended family and friends have always been very kind. They know that I struggle in noisy situations, they know they need to face me so I can read their lips. They know sometimes they need to tell what they're saying to a third party (my mom, baby sister, husband) so I can understand.
Of all my family members, only my baby sister and I know how to sign! :) We took three semesters worth of sign language, so we know the basics pretty well, but not exactly fluent for full communication. Not even my husband can sign. My mom took a semester with me, but promptly forgot most of it.
As with any disability, you learn to adapt. If there's a family member who's in a wheelchair, you learn to pull up the rugs, don't leave clutter around, keep certain stuff at a lower level. After a while, you don't think so much about it. You just "know" that you have to make certain allowances. Like whenever somebody was talking at the dinner table, they knew to face me even if they were talking to somebody else, just so I could read their lips.
I think it would be a lot harder if Adele wasn't born into her deafness. Because I don't know what it's like to be hearing, I can't miss it. I never had it in the first place. But if I were to go blind, I'd probably cry a million tears because I know what it's like to see, I know what I'm missing out on. I didn't have to do a lot of adapting, it's just the way I am. It's usually others that need to adapt, remember to look at me, be patient in noisy situations.
Well, that's a beginning of a novel for ya! ;) Ask any questions you like, I'm sure it helps hearing from somebody in your daughter's shoes.
Oh yeah, I also wanted to share somebody else's blog with you: http://lauriescidance.blogspot.com/ This lady is also deaf (I think from birth?) and in her 40s she started losing even more hearing. So she finally opted for her first Cochlear Implant at 48. It went so well, that she got another Cochlear Implant in her other ear! :) She did tell me that if she had started to look into CI 10 years earlier, she wouldn't have done it because she wasn't ready to make such a big change.
I know I'm not ready to do a CI yet... but I think time keeps bringing me closer and closer to that idea. When I first started thinking about it, I had a lot of hang ups - like, they'd cut my hair!! Now? Pfft, cut away if it means I can hear better. But it's a MAJOR surgery and I'd have to learn how to rehear all over again. I'm just not yet ready to get serious about it... but I wouldn't be surprised if some time in my 30s I do it. :)
I think it's wonderful that you have several ladies who are willing to answer questions for you.
ReplyDeleteThe video is adorable! I can't get over how much Adele' looks like Corynn.
Thank you
ReplyDeleteThank you
Thank you
a million times THANK YOU
for posting this video of Adele'. Being so far away and not being able to be a "physical" friend, I was moved to tears- thankful for the technology to be able to see her move and smile and coo- what a wonderful Valentine's present.
I love you, dear friend!
Oh, she is absolutely darling! I'm praying for her!
ReplyDeleteCara
(Mrs. Bonnie's sister:), yes half the family reads this blog)
Thank you for posting the video! She is adorable..it is nice to hear your voice too!! Keeping you in my prayers...Jerelene
ReplyDeleteI will keep your precious Adele in my prayers.
ReplyDelete