Giant Steps

School appears to have had a positive effect on Nina.  Although she sat through the nursery class in the school where I work last year, she was not officially enrolled.  When classes started this June, she became a bonafide student.

Perhaps it was because of the exposure, or maybe it was simply the timing, but all of a sudden, we noticed that she started talking more and that her words were easier to understand.  She developed an appetite that could rival any adult and all of a sudden, we began to notice that her clothes all started getting smaller and shorter.  Growth spurt?  I can't think of a better term for it except that.

I didn't put too much thought into it but when more and more people started to notice, it re-affirmed our observations.  A perfect example was her dentist whom we last saw in July.  When she saw Nina yesterday, she immediately exclaimed that Nina appeared to have suddenly grown from a baby to a child (and not even a toddler, mind you).  True enough, Nina showed how much she had grown up by singing to her dentist about brushing her teeth and by willingly sitting on the dental chair by herself (a first) without any tears or complaints.  

Time indeed flies fast.  I know I still have to catch up on her home programs for OT, PT and speech but at least even with the fact that I lack focus on our homeworks on these, her improvement has become more than significant if I may say so myself.  I just can't wait to see what her Dev Ped will say when she sees her.  :-)

Busy Bees

I just realized that it has been ages since I last updated our blog  😔.  With my work,  the kids being in school, having to make sure that all their assignments are done and keeping them away from the TV and all other electronic gadgets, there is barely enough time for me to put my thoughts down in writing - suitable enough for the blog.  My bad.

Needless to say, everything in the home front is busy and by busy, I mean on a positive side.  Our little miracle girl is growing up mighty fast and she isn't afraid of putting her mark on this world with a bang. I am so glad she is at that stage where she does not let funny looks or snide remarks bother her.  (Come to think lf it, she and her classmates are all at that stage where they never let physical appearances cloud their judgement of a person - now why can't grown ups be like that?)

Hopefully, I will soon be able to manage my time better so that. I can squeeze in some interesting entries here.

Cheers!

Looking forward to brighter tomorrows

Needless to say, my blog has been neglected in favor of some other pressing interests (facebook and candy crush to be exact). My apologies. I'm sticking my head in for a bit just to let you know that we are all doing fine and that Nina has been exceptionally talkative over the summer break - which is a wonderful improvement as far as we are concerned.

Hopefully, we will be able to push thru with the second syndactyly release before school starts in June. From the looks of it, that surgery will be done together with the ear surgery to put in t-tubes i her ear to help drain the liquids. If everything works well, that will also mean a great improvement to her hearing and consequently to her speech.

We're now doing home programs for OT and PT and I will soon train for the implementation of her home Speech Therapy program. Her therapist and developmental pediatrician have broached the idea of my entering this field on a professional basis and to perhaps help them implement the programs for other children with special needs. I've been piqued with the idea but i know i will need to think and pray about this before making any drastic changes. I love that it has given me a new sense of purpose, something to look forward to but let's not think about that yet. Perhaps after I've started with Nina's program, then it will be be easier for me to make a sound decision on what goes next.

For most Filipinos, summer is on its last leg so I hope you can all make the most of it before the rains start coming in regularly.

Hugs and kisses,
~ Nina & Mom

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 2^nd 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!

Wedding Advice from Fr. James B. Reuter, SJ

Last December 31, the year ended together with the passing of a very dear family friend - Fr. James Reuter. To many, he was known as Fr. Jim. To us, he was Tatang, Papa Bear, Pops, and Kamote. He never minded being called those pet names. To his erring kids/students, he called them "my duck!" Hearing those words from him and you knew you were in trouble. But he was a very loving man and would never fail to give us hugs whenever we visited him. All holy masses said by Fr. Reuter came with a general absolution which was great for us. One time, he was asked to say 3pm mass on a Saturday. We asked if this would be an anticipated mass and someone commented that it was much to early to be one. His reply? "The Lord does not keep a stopwatch, this WILL be an anticipated mass."

Our family was among those privileged to have been close to him when he was alive. I say privileged because he is really a holy and inspiring priest. And so, after reading the blog of chuvaness.com where she wrote down the wedding advice given to them by Fr. Reuter, I decided to do the same.

Hubs and I got married in 2006. during that time, he was already sickly and so weren't even sure he could officiate the wedding. Luckily, nothing could stop him from saying no to us. Before he agreed to wed us, he requested to meet with us first. Then like chuvaness, he gave us several pieces of advice which I would like to share with all of you as well.

I hope that these words would help us nurture our marriages. I'm sure he would be happy to know that his messages have been passed on to others. For those who know of him, his remains lie in state at the Church of the Gesu in Ateneo. His remains will be buried tomorrow after the 8am mass.

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1. Never let the sun set down on your anger. To the man, always kiss her goodnight. To the woman, never turn away when he kisses you. If he sulks then the girl should be the one to kiss him but then it means that she is stronger/more than a man than him. It takes a man to be humble;

2. Say sorry. The man should say sorry first. Same principle as #1. The girl cannot court a man so he should be the one;

3. Pray together. Hear mass and take communion together;

4. Whatever unites you is good. Whatever separates you is bad; (this is where the advice to chuvaness comes in that they should always sleep in the same bed/room)

5. Have a single bank account. (Meaning do not have separate accounts. Related to #4 advice). Never fight about money;

6. Never go out alone with someone of the opposite sex other than your spouse. Always bring someone with you. He goes on further to say that even if there is no malice in your part, people who would see you and not know whom you are with could think thoughts about you and that would reflect negatively on you and on your husband.

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Some of you may not agree with some of the things he said but just think about it na rin. These I feel are words of wisdom from a man who was blessed so many lives, including ours and who has experienced marriage albeit second handedly from the people who often run to him for advice (my parents included). As an anecdote, my mom was very close to him even when she was single. After graduating from college, Fr. Reuter helped her discern if she was to enter the convent or not. He officiated my parent's wedding as well and so whenever she and my dad had an argument, she would always run to him to tell him about it.

Tatang, we will miss you for sure but you have done much more than what was expected of you. I am pretty sure Mama Mary has escorted you to heaven by this time and that you are now embarking o a heavenly stage play with your crew up there. Say "hi" to daddy for us and rest assured that we will keep to heart everything that you have taught us.