October 19th, 2008 at 8:49 pm
(Hearing, Sabrina)
Lets see if I can quickly summarize the last week or so. We had our meeting with First Steps and the therapist from CID. We have been approved for assistance from the state of Missouri through First Steps. This paved the way for Sabrina to get her hearing aids on Wednesday. We have a loaner set of aids for now and CID has ordered her own set.
We went in on Wednesday, they checked her ears and checked the molds they made for her ear inserts. Then they took out the set of loaner aids and programmed them with the information from her first visit a few weeks ago. They put the first hearing aid in and turned it on. The look on her face is beyond my ability to describe. I am hoping its one of those moments that stays with me for the rest of my life. She stopped and just… I can’t really describe it. She… ok, I can’t describe it. It was like a connection was made, like something entirely new happened. We know she was hearing things before, but like things suddenly changed and she didn’t quite know what to make of it. They put in the other hearing aid and we went back into the test booth. Before she was hearing somewhere around 60 decibels. Now we are probably hearing at around 20 decibels. These are all rough guesses as we are dealing with a baby, but they seem to be accurate.
We then sat down with our therapist. She walked us through care and feeding of the aids and sent us home witha box-o-stuff. Turns out there are several dozen things that need to be done each day to prepare the aids to go in and to put them away for the evening. These devices are high tech and being high tech one of the simplest combinations of elements can be the death of them. That combination being H2O. We have two different drying/dehumidifying things. One is basically silica gel that can be microwaved to dry it out after several uses so it can be used over and over again. It changes color as it gets damp so we know when to microwave it back to dryness. The other plugs in and drys/dehumidifies. It has a brick of sorts that needs to be changed every few weeks and a UV light to act as a disinfectant. We have a battery tester, a small stethoscope type thing, several other bottles and containers and air puffers and extra batteries and extra brick things and battery cases and and a CID shoulder pack and a book and… I’m sure I am missing several things. We have definitely entered a whole new world here with a rather impressive learning curve.
Now we are home with her. We have been able to get both aids in but the left one doesn’t seem to fit correctly. It gets a feedback loop whenever we put it in. The right one seems to work and fit great. From speaking to the therapist while she is now over a year old, her first hearing day is really Thursday. So everything that a baby would start learning the day they were born about associating sounds with concepts Sabrina started learning on Thursday. So technically Thursday October 16th was hearing day one.
Since then she has done a pretty good job of leaving the hearing aids alone. She pulls them out periodically, she fights us most of the time as we try and put them in, but what would you expect from a 13 month old. We have been trying to put both of the ears on but we are more likely to just put in the right one as we are having the fitting problem with the left one. We had called the therapist Thursday afternoon and again on Friday to ask about the problem but had not heard back. So we figure one aid working properly is better than putting in the other one and having it squeal at her half the day.
So that’s where we are. Behind the curve as usual but right now she has her ears out since her bath and is happily chewing on her pacifier while making ya ya ya sounds. Nothing better than that.
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October 6th, 2008 at 9:54 am
(Hearing, Sabrina)
I didn’t realize I had not posted in two weeks. Things have been busy. Sabrina has been going to physical therapy for sitting/crawling issues. She refused to spend any time on her stomach and would not sit up for more than a few seconds at a time. We are about six weeks into therapy (once a week) and she had learned to sit up on her own. She does not get to the sitting position in any way that I have ever seen a baby get to the sitting position, but she does it. I almost think its more graceful that the normal way kids sit up. Or I might be bias.
Quite a bit has happened on the hearing front. I contacted CID (Central Institute for the Deaf) here in St. Louis. The coordinator for the 0-3′s was incredible. After all the experiences with doctors and nurses, we encountered a few people who genuinely seemed to care about our child and what we had to say. Most, not so much. The CID coordinator took an interest, took my information and we had things rolling faster than I would have ever imagined. I have become use to waiting weeks for anything to get accomplished. CID put us in touch with Missouri First Steps. Our First Steps coordinator has been incredible, I was prepared to gird my loins for battle and there I was standing in my armor with no battle to fight. She picked up the ball and ran with it. I could not have asked for a better experience. She came out to the house and got the paperwork set up, we got in with CID last week for another booth hearing exam. (More on that in a minute.) She also pushed to get our appointment moved up, we were scheduled for two weeks from now but we were able to get in on a cancellation early
We walked into CID last week, we were greeted in the parking lot by a staff member who was going to her car. Apparently we looked like noobs and she stopped and gave us directions to where we needed to go. I suspect that fact that we parked in the visitor parking and probably looked lost had something to do with it. I sat in the lobby, after checking in, feeling like I was going to a job interview. Not entirely sure what I was nervous about… only Sabrina’s entire future I suppose.
Once again I was sceptical about the exam. We had been through two of these tests, the first being a wash with some indications of a problem, and the second not being much better but definitely pointing to a problem. The ladies at CID were excellent. They worked their way through the test as best they could with a cooperative/uncooperative 11 month old. The results from the first two tests were shown to be accurate and they had a sense of the degree of loss. In the lower ranges she can probably hear around 50 db on up and the higher ranges we are looking at 70 db on up. So moderate to serious hearing loss. We sat and discussed the results and our options. It felt good being treated like a partner in the solution rather than some poor clueless schmuck who happened to roll into the hospital looking for help. Not to say St. Johns audiology was bad, it just wasn’t this good. We started discussing the future and appointments, found out our First Steps coordinator was already moving towards an all hands meeting with the school, the therapist, herself and us, all in the same room at the same time. The kind of meeting we always wanted with the hospital before Sabrina was born but never got.
We even took ear molds for hearing aids. Assuming the approval goes through at the meeting on the 13th, Sabrina will have her hearing aids next week. We never would have even dreamed of that before. We were figuring, the BAER test next week, a few more weeks for the next appointment and then a few more weeks for the hearing aids. We also canceled the BAER/ABR test. The ladies at CID are confident in their results and said we could go ahead with the BAER if we wanted to but it was not a requirement to move forward. This kid has been through enough and she does not need to spend any more time sedated. She slept through enough. I gleefully canceled the test. We can always reschedule it later if we need to. It is no longer a necessity to move forward. We did set up an appointment later in the month with ENT so we have a specialist on board for ear infections or any other issues.
So to recap, big meeting next Monday followed by a big day with the hearing aid fitting. But before that Happy Birthday Sabrina this Friday. Year one is almost through.
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