Back in October I would never, ever have imagined that it would take this long to tease out what is going on with Z.'s hearing. If you would have told me I would not have taken it well, so it's all for the best really. I might have slapped someone, thrown a tantrum, or sulked for days. (Oh wait. I think I slightly recall sulking for days about this.) Well, I might have slapped someone in an unbecoming fashion.
October: We meet with the international adoption specialist. She recommends a hearing screening. She wants us to get a BAERS test because Z. is nonresponsive.
October: We make an appointment for the screening. We cannot have the BAERS test until we fail a regular screening.
October: The animatronic animals give me the creeps. We do not pass nor fail the regular screening. We have a flat tympanogram. Z. is minimally responsive. We are sent to the pediatrician or an ENT for an eval for possible fluid.
October: The pediatrician does not see any fluid. It is recommended that we schedule another screening.
January: We repeat the hearing screening. Z. is more responsive. She is also afraid of the clanking bear and rabbit. She has moderate unexplained hearing loss. We have a flat tympanogram. We are referred to the pediatrician or an ENT for an eval for possible fluid.
March: We visit the ENT. He is kind of a jerky but he picks out the wax at least. Then he recommends a hearing screening.
April: We repeat the hearing screening. The audiologist states that she is much happier with Z.'s responses this time around, that the hearing loss indicated by the last screening was significant and worrisome. This time the typanograms are still flat, and there is an overall 30% hearing loss across the board. We are referred back to the ENT. Also, we will need to schedule a screening two weeks after the tubes are in place.
The little special booth is becoming a home away from home. It's pretty roomy, with 3 or 4 chairs scattered about at random. The whooshing noise and the fuzzy noise and the earpiercing siren-y noise and the whirly noise no longer phase us. The animals are still creepy. There is no getting around that.
I think we are pretty much 90% down the road toward tubes. I am not going to fight it nor am I going to stress over it. Z. has some type of hearing issue, probably minor, probably due to fluid which no one can see. She is speech delayed. She has not made one single new sound since being home. My friends' girls who have been home from China the same amount of time are saying "Mama" and "Dada" and "No" and "Hi!". Z. is saying "mmmmmmmmm" and "Ah Bah!" as she has since the day we met. Tubes are the next step. Yesterday I put our name on the waiting list for a speech evaluation with a speech therapist. Apparently there is a dearth of speech therapists in our area (career option for anyone out there?) and the waiting list is quite long.
My realizations:
1. We had the first screening too soon. Or maybe not. It was too soon after Z. came home to get anything useful from her for sure. She was still very nonresponsive and not connected with us at all. If I had been confident that there was nothing majorly wrong I could have waited on the testing. If we had been offered the BAERS test we would have known right away if anything was amiss. We did not want to take the very long road, but we are on it.
2. I should have skipped the pediatrician and gone straight to the ENT. I knew it, the Great Internets said it was so. But I didn't like to circumvent my ped who I like very much. But I should have. That would have meant 1 less visit to the audiologist.
3. There is something going on with her ears. Even if it is mild hearing loss due to fluid I want to figure it out and get it treated as soon as possible. We have enough other big hurdles to worry about. It would be good to cross something off the list.
Posted by grrlTravels at April 20, 2006 3:08 PMMy little L had a big pocket of fluid (tmi I know) in her left ear. This was the ear that they constantly said was "clear". They found it when her tubes were put in.
I wish I hadn't stressed so much over the tubes. She started saying new words 2 days after her tubes were put in. I am NOT saying Z will start talking up a storm, but clearly in L's case, she was being hindered by the fluid.
And yes, those animals are freaky.
Good luck with your decisions...
Posted by: Spacemom at April 20, 2006 4:28 PMDang, that is frustrating. For adults, a month or two, or even a year, is not a big deal, but for Z, it's a huge fraction of her life. These delays in diagnosis and treatment are serious. Of at least, they seem that way to me.
Posted by: victoria at April 20, 2006 6:44 PMBummer about the delay in getting to see an SLP. I know it's has to be so frustrating for you as a parent. (Warning: assvice ahead...) I don't know where you live but if there's a big university nearby, some have speech and hearing clinics that offer comprehensive speech, language, AND audiology evaluations conducted by student team and certified supervisors at a "reduced" rate (still expensive). I'm an SLP grad student at Northwestern University in Evanston, IL and our clinic offers one stop shopping. Some university clinics don't bill insurance directly (bummer) so you'll have to submit a claim on your own which can be problematic for reimbursement.
(Warning: more assvice) As far as the "BAERs" test goes...the name I know for it is ABR (Auditory brainstem response)... Well, the state of Illinois mandates a modified form of this test (AABR) on all infants in the hospital at birth(many states do not screen hearing at birth because there's no legal requirement). So at least here in Illinois, a child does not have to fail a hearing screening to "qualify" for the ABR. Feel free to email me with any other questions you may have. Good thing you are advocating and staying on top of things with your daughter. Hang in there! I hope I didn't babble on too much. Here's a link that explains it: http://www.childrensmemorial.org/depts/otolaryngology/ear5.asp
Congratulations on finally getting some answers. Having a plan of attack is always a better feeling than confusion.
I had tubes when I was 5 and it wasn't a big deal for me. The biggest annoyance was having to wear ear plugs whenever I went swimming. They were expensive and I kept losing them, which annoyed my mother to no end. The operations itself I cannot remember, with only flashes of what it was like to spend the night in the hospital.
Posted by: Jennifer at April 21, 2006 10:41 AMMy 7 year old got tubes this year because of hearing issues and he said when he put the tubes in a large amount of thick liquid came out. That night she started complaining about how loud everything was and still does. The tubes did the trick. Hopefully that will be the same for you. I will keep my fingers crossed.
Posted by: Mary at April 21, 2006 10:56 AMI can understand how you feel - DS had fluid from 10 months until his 18 month old check up when we were referred to the ENT and had tubes inserted. (I don't fault the ped for this - this was a winter when he was diagnosed with severe asthma and he had bronchitis twice and was hospitalized due to pneumonia for three days)His case was serious to the point that our first ENT apointment was on Monday and his tubes were inserted that Friday (and this was a surgeon who was booked 6 months in advance). He had learned how to communicate well enough without speech that he required two years of speech therapy after he turned 2, since his only words were Mama, Dada, Kay (his older sister), no and LaLa. It made a big difference for him. I hope and pray that it will work as well for Z. Hugs and good luck!
Posted by: Noreen at April 22, 2006 2:02 PMCan I ask, what would 30% hearing loss mean to her in terms of her development? What's the worst case scenario? Or maybe don't tell me, I feel horrible asking that.
The reason I do is because I have 30% hearing loss from bacterial meningitus when I was 6 months old. It wasn't picked up until I was about 16 at which point my hearing results were a little worse than the previous patient who was a 57 year old man who had used a jack hammer his whole life. I have problems at noisy parties and one ear is slightly worse than the other so I suck at determining direction (terrible when you've lost the cordless phone) but I hardly notice it and no one else would ever suspect it. That's why I was wondering what it would mean for Z.
Posted by: Sassy at April 23, 2006 2:55 PMWe've been on the speech eval/speech therapy waiting list/hearing test fiasco merry go round. Please feel free to drop me an email if you want to talk to someone who hit the total point of 'It's been 6 freaking months why can we not get this addressed?!' exasperation.
Posted by: chicagowench at May 2, 2006 11:59 AM