Not to be Underestimated

Those who are familiar with Apert Syndrome know that the fingers are the single most defining characteristic of the syndrome.  During normal development, the fingers start out as fused together although eventually, a signal is sent to the hands and feet so that the fingers and toes separate.  Unfortunately, this process does occur for a person with the syndrome and hence the fusion.  

Surgery is most often recommended as early as possible so that as the child grows, his or her ability to hit the developmental milestones are not hindered.  Unfortunately, even with the syndactyly release, their fingers remain stiff because of a missing middle joint (called the PIP or proximal interphalengeal joint).  In the case of Nina, while she now has 5 fingers on one hand (the other hand surgery will be scheduled soon so on the left hand she only has 3 digits), she is still unable to make a fist or bend her fingers like other children.

The lack of hand dexterity makes it difficult for her to perform simple tasks.  Holding a pen, writing, cutting with scissors, buttoning a shirt and even picking up small objects from the floor are always a challenge.  This is one of the things that Nina's teachers in school take into consideration whenever they present materials to her.  But sometimes, our little girl seems to have more faith in her abilities than the people around her.  

One example in particular is the sewing activity.  Although sewing is a standard material for her age group, Nina's teacher opted not to present it to her because of her condition.  Her teachers were worried that the might end up frustrated with the activity, but she kept bugging them about it.  Eventually, the teacher relented.  To her surprise, not only did Nina complete the activity at the first try, she did it excellently!  And because she wanted to bring it home to show to us, she did it twice so that she could leave one for her portfolio.  

Above is the progression of her sewing work in school over the past 3 months.  

When she brought home the project, I had to ask her several times if she was the one who did it or if had gotten help.  And even though she said she did it all by herself, I wasn't convinced and even had to confirm it with her teacher. (I know, bad mom!)

Not only was it a big achievement for Nina, it was also an eye-opener for her teacher not to undermine the capabilities of her students and for me not to limit the capabilities of my daughter.  I read this quote from Facebook page for mom's with special kids needs, it said: "Let us not let textbooks limit what our child can or cannot do."  And in the same way, we should not let one person's disabilities define what he or she can or cannot do.  

Strength does not come from what you can do.  

It comes from overcoming the things you (or other people) 

once thought you could not.

Another Year

Dear Nina,


I can't believe how quickly time has passed.  I feel that the past five years just sped by without giving me a chance to cherish every moment.  You've been telling us that you aren't a baby anymore and though I agree, a big part of me cannot seem to let go of that thought.  Yesterday, you declared to Tita Pu that you were 5 turning 10years old.  You know what?  Sometimes, we think so too!

We're happy that you love your new school and even your teachers proudly inform us that you seem to have coped up very well with the Montessori Method of learning.  You know, there have been several instances where you've managed to stump Kuya with the facts that you learn from school (although I'm sure he wont admit that so let's keep that as a secret, okay?).  Dad and I pray that as you grow older, your enthusiasm for learning and for experiencing new things will remain.  We love seeing your face light up with joy whenever you experience something new or when you proudly show us something that you've accomplished.  Know that Dad and I will continue to do our best to provide you and your Kuya with more opportunities for learning (coupled with a lot fun, of course) for as long as our bodies can hold up.

I must say that this year was a good year for you health-wise.  Although we continue to deal with issues on colds, cough, asthma and allergies, I'm happy that you've managed to stay away from any hospital confinements and frequent trips to the Emergency Room - we had 1 or 2, right?  Let's hope that this year we can trim down those visits to a zero, shall we?

This will be a very very good year for you, I am almost sure of it.  Of course, we should expect that there will be challenges but we are pretty sure that you will be able to handle these well.  You have Dad, Kuya and Mom (plus all our other relatives) to back you up so what else have you got to fear, right?

Keep viewing life the way you do, sweetheart.  Because as you do, you continue to teach us and to inspire us that nothing can and should ever keep us from reaching our dreams.

We love you!

Mom

She Isn't Scary, She's Just a Little Girl

This entry is a take - off from this article from Huffington Post that I could absolutely relate to.  I'd recommend that you take the time to read it as well.  

Sometimes I can really be mean, especially when it has to do with defending the people that I care about.  During this particular incident, I was feeling evil.  Actually, I can blame the heat and fatigue on this one - after all, walking around campus under the mid-day sun, chasing after 2 children who want to go in different directions isn't exactly a calming experience - particularly if you've had little sleep the night before.  But if I had to be honest to myself, I know that these are but lame excuses for a situation that could have been handled better.  Lest I digress even further, let's go back to my original story....

Last week was the school fair of Kuya and as a tradition in their school, each class organizes a get-together for all the family members of each section.  That Saturday was our scheduled get-together (or salu-salo) so we brought Nina along so that she could also enjoy the different rides and game booths and meet her big brother's classmates as well.

Sometime that morning, Kuya and Dad were in line for the Octopus but Nina and I had to sit that one out (she wasn't allowed, and I am petrified of heights).  I decided to bring her around to check the tiangge stalls in the cafeteria but as we were going around, I noticed 3 boys (probably in Grade 3 or 4) in front of us who were looking and whispering to each other while pointedly looking at Nina.  

I was half afraid that they would say something mean but perhaps seeing that she was with an adult, they kept whatever it was they were saying to themselves.  Still, I couldn't help myself.  My evil twin reared its head and took over from where sensibility and tact decided to take a hike.  I could actually feel the hair at the back of my neck raising out of annoyance at these kids so in a voice loud enough for them to hear, I said:  "Look Nina, those boys are looking at you.  Say "hi" to them!"  

I meant to catch them off guard, and I probably did.  They moved away but continued whispering and looking back.  So I decided to trail them and then called the attention of the boy closest to me by lightly touching his shoulder (kalabit is a more accurate term except that there seems to be no appropriate english translation for it) and then called out: "You keep looking at her, do you want to say hi?"  Nina, say hi to them!"  

As expected, they ran off without a word.  1 point for mom!  I had a smug look on my face and my daughter... well let's just say that she was probably wondering what that was all about.  Thank God she was oblivious to what was going on.

In hindsight, I know I could probably have taken a more mature stance of dealing with it.  (Although I hope to God that He wouldn't think that I need more practice and send another similar incident my way anytime soon.)  Maybe when I get better hold of my temper or perhaps when I can see that my daughter would be capable enough of defending herself, I will be able to come up with a witty remark that would give us the reaction that we hope for. But for now, I am grateful that at this point, my daughter remains unaffected by the stares and whispers of other children.  Although I know deep in my heart that it won't be like this forever, I pray that in time, we will be able to mold her to be strong and confident enough in herself to rise above those challenges. .

Sometimes, we are caught off guard by the comments our children make, especially towards individuals with special needs.  As a parent, I know that I should always be on my toes, always be prepared to guide my kids in being polite and in not being judgmental.  

I echo what Alice Ann Meyer said in her article:

"If you are the parent whose child says another child looks funny or scary, don't simply say, "That isn't a nice thing to say." While you are right, it's not nice, simply saying that and walking away still isolates my child. The next time follow that statement up and tell your child, "I'm sure he's a very nice boy, let's go meet him." Please, come introduce yourself and ask my child's name. I assure you, we don't bite! My child is just like yours; he can be sweet, loving, throw temper tantrums, and be a handful. And I assure you, I am just like you; I am a parent learning my way through this.

If your child is curious and doesn't say anything mean but still notices he looks different, please, introduce yourself to us, ask us our names! Include my child in your world. I promise you, he's not scary, he's just a little boy."

In our case, she's just a little girl - pretty much like any 5 year old little girl that you may know of.  When you see us, say "hello" and do get to know Nina better.  You'd be surprised at how she can quickly capture your heart.

Because I'm Special

Following my post on Nina's comment about her "sticky hands", we spoke with her teacher and they agreed to talk about each child's uniqueness in class.  For me, the advantage of a non-traditional school set-up is that matters like these can easily be addressed and incorporated into their lessons.

After that incident, she only asked me once: "Mommy, why are my hands sticky?" But she also followed it up with "Because I was born special?"

Sticky hands or not, we all agree that our children are special - with or without the presence of any disability.  But for parents who have to deal with more challenges than usual, it is but natural that they believe, with all their heart that their kiddos are doubly special than the rest.

Psalm 139:13-16For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.

Sticky Situations

I knew I should have pushed for her surgery.  :-(  But I didn't want to risk scheduling a procedure with a runny nose.  It's during times like these when I feel like I failed at doing what's best for the kids and in this particular case, pushing for Nina's syndactyly release last summer.

right hand

At the dinner table tonight, Nina asked me why her fingers were "sticky."  What she meant was why her fingers were stuck together and not separated like ours.  Because I had mentally prepared myself for discussions like these, I thought I would be ready when the time came.  I was wrong.  

left hand

Following my "script", I gently explained that it was the way God had created her and that each of us were different in our own ways.   Although I was pleased with my answer, I completely forgot to consider the fact that my daughter is, was and perhaps, will never be satisfied with a single question.

She then asked if her fingers would become like ours once she grows up.  (At times like these, you know at the back of your mind that you are treading dangerous waters -- but I had to answer her so I carefully chose my words.)  I told her that when she no longer had colds, her doctor would work on releasing fingers.  Her big brother, being the curious child that he is, then asked how they would do it.  I didn't want to say that the doctor would use a knife (because they might decide to do the deed themselves) so I told them he would use a scalpel emphasizing that it was a tool that only doctors could use.

Nathan suddenly had that worried look in his face and asked if his sister would die to which I assured him that she wouldn't and that she had already undergone surgery before on her head.  I told him that a doctor also used a scalpel when they opened her head to fix her bones and that even after they did that, there was his baby sister beside us happy and healthy.

Nina remained quiet for a time and the next thing I knew she began tearing up.  I asked her what was bothering her and in between sobs, she said that she was scared of the doctor's scalpel.  Needless to say, I was devastated.  As I hugged her and reassured her that everything would be okay and that we would all be there for her, I knew then that we should have gone through with her surgery sooner and that we should expect a very distraught child when we do schedule it.

I know that it's too late to do anything now except to prep her so that when the time comes, she will be ready.  But geez, I have no idea how to do it :-(  Wish us luck please?  And while you're at it, do say a prayer that we get this thing (the syndactyly release -- and the tube for the ears)  finally over and done with.


P.S. - I knew something happened in school which prompted her to ask about her hands and so I asked her about it.  And true enough, one of her classmates asked why her hands were "sticky".  Note to self - talk to Teacher Joanna about this so that she can perhaps incorporate something into their lessons about the differences in each person

Aint No Button Getting Me Down

In an older post, I talked about Nina's fascination with buttons and how she would work on our shirts until she was satisfied that they were all properly fastened.

Just the other night, as we were preparing for bed, she chanced upon one of my button down shirts which was hanging by the cabinet door.  Instead of getting ready to sleep, she began threading the tiny buttons of my shirt into each hole.  I knew for a fact that once she started with something, she wouldn't stop until it was completed so I quickly got my phone and started recording her progress.

It probably took her a little under a minute to complete the top button and her kuya and I were becoming a wee bit impatient (Don't you think that we adults have that need to have everything done as quickly as possible?  I know I do).  But in the spirit of trying to be a good parent, I decided to wait it out (and leave kuya with no choice but to do so as well).

While I watched her, I realized that had it been me, I would probably have stopped even before finishing the first one.   She struggled with each one but she kept going and going without showing any sign of giving up.  It was then that I began to reflect in awe at the fact that my little girl, who has been diagnosed with a "disability" was able to patiently though a difficult task without a single complaint, without taking a break, and more importantly, without even asking for help whereas I would normally grovel or perhaps even give up the moment things get a little too challenging or inconvenient.  Now isn't that mortifying?

It really is humbling to come to the realization that my daughter, through her actions, is teaching me perseverance in the face of adversity.  Normally, it should be the other way around and yet, here she is, doing soo much better than me.  I know I have so much to learn at this point, luckily I have a wonderful teacher ;-)

Maybe I should start keeping a spare button with me just to remind me to never let little things get in the way when it comes to hitting my goals.


"Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength."  Arnold Schwarzenegger

Bound Together by Misspelled Genes

How can your heartbreak for a child you've never known?  How can you feel the sadness of someone whom you've not ever met?

We are all bridged together by a threads of commonality - a single gene that has allowed us to connect in one way or another.  That misspelled gene that brought about our children's condition, is the same thread that binds us all together.

I received a Facebook friend request today from someone I did not know.  As soon as i checked her profile, a familiar face greeted me - the face of a child with Apert Syndrome.  Perhaps because of my familiarity with Nina's case and the friends i have made both here and in other places has taught me to zero out on the Apert kid merely by their facial features.  Sometimes I check the hands just to make sure, but more often than not, there is no need to do so.

I saw that that she and I had common friends from the Cranio communities and i was pleased to see that she was based in the Philippines.  I approved the friend request and added her up to the Apert Manila page that I had created as well.  A few minutes after, she sent me a private message.  And so i came to know of this pretty little girl nicknamed Ramram and her strong-willed Mama Raquel even though it was too late.

They chanced upon Nina's video on you tube.  Seeing how well she had thrived after her own surgery, they decided to bring Ram to PGH for her craniotomy.  The procedure had gone well, or so it had appeared.  But in less than 24hours, her vital signs went down and then she was gone, all too soon.  Despite the fact that she was under the care of one of the best cranio teams here in Manila, the path which they had begun to create for her came to an abrupt end.  

My heart bleeds for the parents of Ramram.   My heart bleeds for Mommy Raquel who treated Ram like her own.  I couldn't help but cry at the idea of bringing in a well child to the hospital with hopes of even making her life even better only to end up not being able to bring her home anymore, or hug her, or kiss her evenf or one last time.  I scan through the pictures of her mom's facebook account and all I see is a beautiful and angelic face.  A face no different from Nina's.  I am told that the reason they had the courage to go through with the surgery was because of Nina.  I can't help but think if things would have been much better for her if they hadn't seen the video at all.  While it seems that the Lord had other plans for Ram, the loss of such a young life is disconcerting.  The thought pains me but I know that what I feel now cannot even match half of what her parents felt when they were told of the news.

I have always favored the saying that "everything happens for a reason" but when that 'everything' happens to you, no amount of reasoning will ever be enough.  When grief and sadness envelope your whole being, everything else will come up empty.  

I know very little about this family and yet my heart believes that no matter how short she had spent her life with them, the memories they have of her will always be special.  Her presence albeit short, will change them drastically but hopefully positively, in the same way that knowing of her story has changed me over the last 24 hours.

Everything happens for a reason.  Whatever the reason may be, I pray that Ram's sacrifice of having to give up her wonderful earthly family was not in vain.  I pray that all families who are experiencing or who have experienced their own losses will find the light at the end of the tunnel.  I pray that we all learn to appreciate everything that we have, regardless if these aren't what we had hoped for.  I pray that each parent will, at the end of the day, never forget to hug their children and tell them how much they are loved.  

And to you Ram, i wish I had met you.  i wish Nina had met you because you would have become such good buddies, I'm sure.  Thank you for blessing our lives even though you are no longer around.  Thank you little angel, thank you for giving us so much in the so little time that you had on earth.  Go ahead now, flap your wings - it's time for you to fly high.  Rest in peace sweetie, your task is completed and you have done it well.

Ramram and Mommy Raquel (photo used with permission from the owner)

Conquering Mountains Through Buttonholes

This happened probably around late last year but as usual, things started piling over and writing about it was set aside. Still I knew I had to write about it so I decided to temporarily jot it down on my Ipad waiting for my son at the doctor's clinic until I could fine tune things up a bit for the blog.

Nina has always had a fascination for buttons and buckles often times, she would insist on buttoning and rebuttoning her jacket, her dad's shirt, her own blouse, or her sandals.  While hearing mass one Sunday, Nina took favor on the buttons of my blouse.  Unfortunately, the button was so small and the holes were a tight fit.  After managing to unbotton my shirt, she then began working on putting it back.  I have to say that even for someone with fully functioning digits, the task would be challenging particularly because the holes were relatively small.  But still she persisted.  She repeatedly refused any help from me, her dad or her aunt who were all beginning to notice that it was taking her a looooong time to complete her self appointed task.  Because I had to stay still until she finished her task, I was become somewhat impatient (not to mention uncomfortable) but i couldn't convince her to get any help.

After about 25 minutes of struggling, she finally got the button in.  Was i proud of her?  I was bursting!  While this may not appear to be such a big deal for most parents, being able to button up a shirt when you have 3 stiff digits in each hand is a big big milestone.  It wasn't easy, but her determination made it possible.  

Patience is really something that i know i need to work on developing but seeing my daughter work tirelessly inspires me to do the same.  How many of us give up so quickly when things don't quite go the way we planned.  How many times have I lost heart or complained because I could not lose the excess weight I had been trying to get rid of ever since I gave birth 4 years ago?  Comparing my own concerns with the challenges that prevent my daughter from functioning "normally" I am put to shame.  How can I push my kids to persevere  with conquering their mountains only to give up my goal to become healthy and fit because of mere laziness?  Ouch!

Convicted, I convince myself to try harder and follow the example of my daughter.  Yes, the tables have been turned.  My only hope is that she will stay as determined when it comes to the bigger life challenges which would involve not just buttons or buckles.

Lord, I pray that we be given as much determination as Nina has, that inspite of whatever difficulties we may be faced with, we would go on, doing that which we know we need to do.  Amen.

Starting the Year Right

I remember from the last Developmental Assessment that Nina had, we were asked if she could already pedal a bicycle without assistance.  During that time, she had yet to master the skill.  Undoubtedly, it was easier for her not to, since there would always be someone pushing the bike for her and all she had to do was just sit.  Every now and then, we would teach her to put more pressure on her feet and guide her thru the process.  Her kuya was the most patient one but more often that not, he would just give in and push the bike for her so that "she would not have a hard time."

Yesterday, we were pleasantly surprised to discover that after months and months of coaxing and prodding, our patience had finally paid off.  With just a few encouragement, Nina was able to pedal around the terrace with very little assistance from her Kuya.  

Instances like these make me realize that we really need to be grateful even for the small stuff.  While some parents would not make such a big deal out of their kid learning how to pedal a 3-wheeled bike, to a parent of a child with special needs, this IS a big, big, big deal!  

So the next time you see someone celebrating his or her child's milestones, celebrate with them!  Nothing can ever be so insignificant that it cannot be worth rejoicing over.  And for those who shared with our joy, Thank You!  

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!

When Babies are Called Home

I read some sad sad news today from Facebook.  One of the Apert families whose journey with their almost three year old son I was able to follow, lost their little boy suddenly while he was asleep.  I can only assume that the cause must have something to do with breathing issues that many Apert kids experience especially during their sleep but I have yet to know what the real story behind is.

Despite the fact that I have never met this family in person, the very thought of losing a child saddens me.  It saddens me more because as a mother of a child with Apert Syndrome, I find myself being able to relate with these "strangers" with whom we only share a virtual connection with.

This afternoon I've constantly been trying to dry my tears just thinking about Zane and what his family must be going through.  I know that no words will ever be enough to comfort his parents and so I say a silent prayer for them, thinking at the back of my mind that it could have been Nina.

No one wants to let go of their children, but when God calls them back into His fold, we are reminded that these children have only been lent to us by Him and that we are their earthly guardians/parents and that He is their Heavenly Father.

I don't want to live in fear over things that could happen and so I force myself to be cheerful, not to be affected by this loss and trust in Him that for everything He has His purpose.

Meanwhile, I ask that you say a prayer for little Zane whom I know is now back with his Father, back to being an angel that he really is.  Please pray for his parents too, that they may find strength during these times and that they be comforted with happy memories of the life that that was shared with them.

Asking for EARnest Prayers

We had originally planned on scheduling Nina’s 2^nd syndactyly release right after hub’s birthday especially since we were having a long weekend that time, not to mention the school semestral break.  Unfortunately, she developed a bad cold which progressed into a cough the week before the scheduled date so we had to postpone again.  Her doctors are adamant that whenever a surgery date has been set, Nina must be clear of any coughs or colds two weeks before the surgery date.  This is mainly to ensure that no complications would arise during the surgery since they need her nasal passages to be clear as for the general anesthesia.

Recently, the kids had been diagnosed with Allergic Rhinitis and Asthma (sadly both of which were inherited from me) and both of them have been placed on maintenance medicines just to avoid any episodes particularly during the pollen season and the wonky weather.   It was during one of those check-ups with the ENT that the doctor pointed out that Nina had an ear infection perhaps connected with her never-ending sniffles and the cough that went with it that time as well. 

For a person with Apert Syndrome, it is typical for the midface portion to be hypoplastic  or underdeveloped.  That being the case, when ear infections happen, sometimes the liquid/pus in the ear is not fully drained (because of the structure of the ear canal) and that could affect the person’s hearing.  To resolve the problem, tubes will have to be surgically placed in the ear to allow drainage. 

The doctor then requested for Nina to undergo several hearing tests so she could determine if tubes would be necessary in her case.  Fast forward months later, we realized that the tests were never done!  One was because hubs and I discussed that we should arrange for the test to be covered by our HMO but because the requesting doctor was not part of the network, we had to look for one that was.  But things started coming up and before we knew it, 5 months had already passed.  We returned to the first doctor and sadly that the infection was still there.  So now, the tests are imperative and urgent but I am still hoping for a miracle. 

Honestly, I don’t want Nina to have to go through any more operations.  I also know that the tubes in the ear can sometimes get clogged so it’s possible that the surgery isn’t just a one-time thing.  So while I’m scheduling appointments with an accredited doctor, I am also praying that the infection dies down and that the doctors will see that there really is no need for tubes to be placed in her ears.  Will you join me in praying for that please?

Almost Three!

Someone's birthday is coming up real soon!  She knows it because we've been singing "happy birthday, nina" to her and there are times when we catch her singing to herself and even pretending to blow the candles on the cake.

I still can't believe how big she's grown and how she has progressed from the time we brought her out of the NICU.  Miracles do happen and she's living proof of that. :)

Taken when she was about a month old

Comparing her then to how she is now, you would not even think that it was the same child.  Yes, she has grown so much and she has progressed so quickly.  And we are extremely proud of her.

If it were only possible to bottle the joy and happiness this little girl brings to our lives, we would have gladly done it and shared it with everyone.  But since we can't do that, we're sharing with you how this little girl never fails to bring a smile to our faces.

Dealing with the Comments

It happened again!  Same place, same pool – in fact, I was actually wondering if it were the same kid.

If you’ve been following this blog, you would remember that I wrote about an incident that happened to us last year while we were at this same beach resort.  This weekend, while spending some time with family, it was as if we had a replay of events.  

Hamilo Coast in Nasugbu Batangas

There was this very lively chatterbox of a boy who decided that I was to be his playmate at the pool.  Actually, I was more of a passive sounding board to him, which was not new to me since Kuya does this to me almost all the time.  Apart from showing me his treasure (15 pieces of shells taken from the beach area), the little boy asked me what my order was for his make believe fast food resto. As with my kids, I decided to play along and ordered French fries.  Would you believe he charged me $450 for it – yes, in dollars!  (Perhaps he forgot he was in the Philippines).  Of course I told him it was too expensive and that was when he noticed my little girl. 

He asked me “why like that” pointing to Nina.  I asked him what he meant about the “why like that” comment and he repeated it and then as if to explain further, put his hands on the sides of his face and pulled them down, adding that her eyes were like that of a puppy's. 

at the indoor playground

Look, I know my daughter is cute, I will not object to that, but she is definitely not canine looking! 

Again, being at a loss for words, I simply told him that of course she did not look like a dog and that we all look different from one another.  Perhaps he felt that a long lecture was next or maybe his attention span could not take anything more than that and the little chatterbox moved away in search of some of the pebbles and shells that he threw into the pool, much to my relief.

Some time after that, while I was out of the pool and Nina was with her Yaya, I heard some kids ask her as well why Nina looked different and because I told Yaya to be tactful in dealing with those comments, she turned Nina away and commented that in fact she was a beautiful baby while giving her a kiss (great job, Yaya!)

I know we could have done way much better but incidents like this always catch me when I’m off guard.  In as much as I know I need to explain to them (the young ones most especially) that all children are made differently and that Nina was born with Aperts and went through an operation, but sometimes too much information might distract them from the lesson that I want them to learn.  Perhaps I arm myself with witty counter-statements that would at least create a impact on these kids so that the next time they meet someone who looks different, they would know what to say.  So how would you do it?  Do you have any witty lines in mind?

With Kuya and her cousin Migs

Oh yeah, a few minutes after I ranted about the incident on Facebook, I saw this post on a friend's wall.  Everything happens for a reason so I know that I was meant to read this post:  

Wherever we go, there will always be people who will judge us (physically, mentally.. everything). It will HURT... but this shouldn't bring us down because God made us this way. All we have to do is to pray for those kind of people, surrender them to God (no evil thoughts.. for it will not bring glory to God..It will not please Him) and be thankful to God for designing us the way we are now. 

~"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know them well." - Psalm 139:14

It's a difficult learning process - for me especially.  But I know I'll get there.  But it is without any doubt in my mind that my daughter is a wonderful work of God and that in His eyes (and in mine) she is perfect.  No matter what other people may say.

Hey, I still need those witty comeback lines so that I don't punch someone's face the next time this happens, so help me God!  Leave a message if you have any :)

Hopes and Dreams

Aside from this blog, I created the Apert Manila blog  hopefully to give Filipino parents of Aperts children with a touch-base / resource page.  Janina's doctors then suggested that I diversify the page to address not only the concerns of Apert families but all those with Craniofacial Syndromes.  Unfortunately, I realized that blogging is way much harder than I thought it would be.  Although I've managed to come up with posts on this page, to my great regret, it has become almost impossible for me to come up with the informative / educational posts on the other blog.

Hopefully I will be able to find a way to create more posts for both this blog and the Apert Manila blog.  Our dream is to eventually start a support group for families dealing with any kind of Craniofacial Syndromes.  Perhaps in the long run, we would even be able to help support / fund the surgeries of needy families to give their children a better chance.

Our household help told me one time that Janina was very lucky to have been born to our family.  They explained that had she been born to a family from their province, she would not have the opportunity to get the surgeries and medication that she needed.  They said that many times, children with disabilities from their provinces would either be left untreated or at worse, left for dead because the parents could not afford to bring them to the right doctors.  The thought saddens me because after seeing the joy that our daughter has brought to our lives, it would be a pity of other families would not get to experience the blessing that their child, regardless of his or her condition, would bring them.

So wish us luck in our endeavor and pray that we will have the strength, the means and the resources to put all these into reality.

For the meantime, please go on reading Apert Manila and do let me know what else we can do to improve it.  If you know of any families dealing with Craniofacial Syndromes, please encourage them to get in touch with us through this blog our through my Facebook page.

Teeth Care

When Nina was born, she had two lower incisors’, one of which was moving.  It surprised a lot of people (us included) but it did not really bother us.  However, the doctors cautioned us that because one tooth was unstable, there was that danger that she could swallow the tooth and/or choke on it.  So we were advised to see a pediatric dentist.

just a few days old, her teeth showing  at the lower gumline

At that time, we had not brought kuya to see a dentist yet so we had to rely solely on the dentist that was recommended to us.   Imagine our shock when that dentist simply pulled down Nina’s lip, took a peek and told us, “yes, that has to be removed”  -- and then subsequently charged us P1,000.00 for that 1 minute diagnosis.  Geez, even I can do that!  Besides, even the untrained eye would be able to tell that the tooth needed to be extracted.  When she extracted the tooth (which only took 5minutes since the tooth was very loose) she charged us another P1,000.00.  If we hand known it would be that simple, I would have just asked my sister-in-law, who graduated from Dentistry, to do it for us!  Talk about highway robbery.  After that incident, we stayed clear from any pediatric dentists.

As Nina grew bigger, we noticed that her teeth were not as nice as Kuya’s.  They were beginning to show some stains although we weren’t quite sure if these were stains or cavities.  It was only after Nina’s cranio surgeon (Dr. Tansipek) requested us rather hesitantly, to see a pediatric dentist that the alarm sounded off.  He explained that because there may be a need for him to do cranio work on Nina around 7years old, it was important that her teeth are kept in good condition since the cranio work would affect her teeth as well.

Nina before her recent visit to the dentist

Upon the recommendation of Dr. Tansipek, we headed off to Dra. Fina Gupit-Lopez of the Pediatric DentistryCenter along Banawe Street in Quezon City.  We were greeted by a young and cheerful doctor who was perfect with the kids (such a far cry from the 1k dentist we previously went to).  Both hubs and I (as well as the kids) immediately warmed up to Dra. Lopez.  Not only was she great with the kids, she was very patient with them even if it was obvious that she wasn’t exactly having an easy time.  To top it off, the fees charged by the clinic were so much more reasonable than the fees charged by 1k dentist.  Thank God we found them!

So now, Nina’s teeth have been treated with fluoride and sealed to prevent any further damage.  Our next step is to wean her from the night time feeding so that the last thing she does before going to sleep is to brush her teeth.  We’ve been trying and for about a week, hubs was able to put her to sleep without her asking to feed from me.  And then suddenly, we were -- and still are, back to square one again…  hopefully, we’ll be able to figure out a way to wean her with minimal resistance.  Perhaps it's because generally their facial construction has been affected by Aperts but we find it difficult to get her to open her mouth wide enough so that we can thoroughly brush her teeth.  It's especially hard for us to get to cleaning her front teeth because there doesn't seem to be enough skin for us to pull up/out to expose the incisors.

This is what Nina's teeth look like now.  The pink stuff is the sealant that the dentist applied, the green stuff is what she ate ;-) and the small peg of a tooth seems to be part of what the 1k dentist pulled out (yup, she did a miserable job despite the fact that she charged an exorbitant price for it).  There are times life throws you a curved ball and you don't necessarily get what you paid for.

well treated and protected teeth

We're Getting There

It's been almost a month since Nina started with her speech therapy classes, and I must say that she's doing a pretty good job.  Initially, she used up the 1-hour session crying over the fact that she wasn't allowed to either nurse from me or because neither I nor her Yaya would carry her.  This afternoon, she barely even noticed that we had left her alone in the room with her teacher.  That's progress as far as I am concerned.


She's also begun to say a lot more words.  The teacher proudly told me this afternoon that the words "apple" and "cup" were very clear when she was asked to repeat them.  The other week, we were so proud of her because when she saw us open the cake box from my sister's birthday, she said "Wow, cake!" and it was VERY clear!  That to us, is yet another answered prayer, another miracle.


Of course, it's still a long way to go for us and I know it wont be easy.  But with the determination that this little girl has, I know that we will get there, slowly but surely.