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