Tuesday, March 5, 2013

Hearing our Way through the Lenten Season

                Okay, so I admit I wanted to challenge God a little.  I was hoping that considering we’re smack in the middle of the Lenten season, maybe He might want to rise up to the challenge of making a miracle out of our situation.  But then that’s completely ignoring the fact that my little girl is a miracle herself.

                What am I talking about?  Ears.  Yup, those fleshy things that stick out from the sides of our head.  For normal children, these barely (if at all) pose any concern for us parents.  But for children with midface hypoplasia the ear infections are common.  If left untreated, it could lead to severe hearing loss or at worse – to meningitis.

               Because the doctors had noticed Nina’s ear infection did not seem to subside even with antibiotics, we were advised to get a hearing test just to see how much the infection had affected her hearing.  The original test recommended to us was a Play Audiometry and a Tympanometry.  The tympanometry was a breeze since it didn’t require much from Nina other than to wear the headphones.  The play audiometry on the other hand involved her having to place pegs on the board the moment she hears a sound from the headset.   It started out good since the headset was not an issue to her, but compliance was another thing since she preferred to pay attention to the toy in front of her rather than follow the instructions and listen to the sounds coming from the headset.  Fail!
Taken during the Play Audiometry 

Crying because of the probes
               So we had to make arrangements for another test to be conducted in place of the play audiometry.  This time, we had to make sure that she was asleep during the whole procedure.  That meant keeping her up late and then waking her up early so that she would agree to take a nap in the ENT clinic.  The first time, we let her fall asleep during her usual bedtime schedule of 7pm but then we woke her up 4 hours earlier than usual.  Although she feel asleep in the clinic, she awoke easily especially when she felt the probes attached to her.  Another fail.
All cried out
            During the second try, we kept her up until 10:30pm and woke her up 4 hours ahead of the usual time once again, giving her only 5 hours of sleep compared to her usual 10-11hours in the evening.  That did the job!  Unfortunately, it took longer for the nurse to complete the test so by the time she woke up, only the BAER (Brain Auditory Evoked Response) had been administered.  We decided to take advantage of her lack of sleep and schedule the ASSR (Auditory State Steady Response) as soon as possible.  The earliest available schedule was the next day so we went with that.  Once again, we followed the same pattern of letting Nina sleep late and waking her up early.  So after 3 days of very little sleep, we were finally able to complete the tests.  We also realized during the course of these late nights, that Nina would fare very well working either the night shift or perhaps doing a straight shift at work when she is old enough.
2nd try - fast asleep before they started the test
3rd and final try

Even before the actual report came out, we were already aware that one of the test results would indicate Nina having moderate to severe hearing loss but we were also advised that this should not be taken as it is but that it should be co-related to the other test.   I need to point out that upon interacting with Nina, one would never think that she had any form of hearing loss.  It was only when the Developmental Pediatrician pointed out to us that it may be possible that she was having difficulty in enunciating words clearly because the infections were preventing her from hearing the correct pronunciation of the words.  

By the time we met with the ENT this morning, I knew deep inside my heart that tubes were a big possibility.  I stubbornly resisted the thought however because as I said, I was hoping we would be given a Lenten miracle inspite of the fact that I had been remiss of my usual Lenten sacrifices.  Hearing the explanations from the doctor made me want to cry again because I didn’t want to add another surgery this summer except for the 2nd syndactyly release which was originally supposed to have been scheduled last year.  Yes, I really am pig headed and I associate that to the fact that I was born during the year of the Pig. 

          To top it off, I was hoping to hear that the tubes would guarantee that her hearing would then be normalized.  But the doctor was quick to point out that while it is possible that the tubes would improve her hearing, it is also possible that it will barely make a difference.  Plus, because they would be using longer (and wider) tubes also referred to as T-Tubes, it is possible that even when these tubes are removed, the hole may not close anymore.  Swimming (which Nina absolutely enjoys) will   have to be done with extreme care.  With all the cons going on in my mind, I really had to ask why the tubes were necessary in the first place.  We were told that without it, the hearing loss could progress to the point where she could become completely deaf or, as mentioned previously, she could get Meningitis.  So there, that really doesn't give us much of a choice doesn't it?  Oh boy…

          So now our next step is either to seek a second opinion or get a second doctor who can perform the procedure in the hospital where her hand surgery will be done.  I guess that means more consultations, more tests and more doctors appointments.  Such is the life of my 3 year old daughter.

          But that’s the way it is… she isn't complaining so what right have I got to complain myself?  Besides, like I said earlier, I know that my daughter’s life has been filled with miracles since the day she was born and for that I should be grateful - not that I am ungrateful, in fact every night just right before I sleep, I can’t help but stare at her and thank the Lord for bringing her into our lives.  Still I wish that her life were spent more in the playground than in the doctor’s clinics. 

          Lord, I’m sorry for testing you – I should have known better.  I know that at this point in time, I just need to let go and let You work your plans for Nina.  Trust has always been an issue for me, You know that I’m always on the lookout for a neon sign flashing in front of my face whenever You orchestrate miracles in my life.   I am trying though, I’m trying really hard.  And this Lenten season, I know that with Your grace, Nina and the rest of us will be able to go through whatever challenges lay ahead of us.  We know that You will remain faithful to us every minute of the day, 24/7.  Let Nina's ears open up our eyes and our hearts that You continue to be on our side even when we have lost our way.  AMEN!