Musings of a mom raising a child with Apert Syndrome.
Inspite of her physical difference from her older brother, Nina is just like any normal little baby. As we are all created in God's image, we would like her to grow up confidently declaring to everyone that she is perfectly created by our Heavenly Father.
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.
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.
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
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.
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
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.
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
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!