Clearly, this is all Random… Including the author.

Busy two weeks

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.