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

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

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.  :-)

Happy 3rd Birthday, Nina!

                                                                                                   October 16, 2012

Hi Sweetie,

     Because today is your birthday, I placed this on my Facebook status message last night:

Three years ago, a little girl was born and immediately our lives changed forever. She initially gave us quite a big scare but she has made up for that with the immeasurable joy that she brings to all of us.

Happy 3rd birthday, Janina! We know that sometimes things are difficult for you and we wish that we could shield you from all that (especially the surgeries, the stares, and the unpleasant comments) but that’s not the way it is. But always remember that in God’s eyes and in ours, you are beautiful and perfect in every way.

Happy birthday, sweetheart! Thank you for always bringing joy to our hearts. We love you very much!!!

     First of all, I know that by the time you do get to read this, you would have no idea what Facebook is but let's just say that it's the "in" thing as I create this post, okay?

     Now going back to my story, since I put up that status message, it's received 133 likes, 60 birthday greetings which do not include the birthday greetings on your dad's facebook page, private messages sent to us and those sent via text messaging (yes this will most likely be obsolete as well by the time you read this too).

     Do you know what that means?  Aside from the fact that you are well known among your mom and dad's circle of friends, it also means that a lot of people love you, care for you, and are inspired by you.  And for that, we are very proud of you!

     This year has been a triumphant year for you because aside from the fact that you have had less health concerns than last year, your vocabulary and talkativeness seem to have multiplied tremendously over the last few months.  Sometimes, it takes a while for us to understand what you are trying to say, but the important thing is that you are doing your best to win over your supposed speech delay.  For the times when we can't seem to understand you - please be patient with us okay?

     As an unofficial nursery student in NJHS, Teacher Emma has nothing but praises for you.  She often tells us that you are even more disciplined than your older classmates especially when it comes to following instructions, cleanliness and to behaving quietly during class.  I have a feeling that you have become her favorite student but let's just keep that a secret ;)  Had you been officially enrolled, I wouldn't be surprised if you came out with honors in the class.  Almost everyone tells us that you're such a bright girl - and that is something that we do know for a fact.

     Since you will be reading this many years from now, I thought you might want to know some trivia about yourself at three.  You love dogs and your favorite foods are: eggs (in any form - boiled, poached, fried, scrambled, qwek-qwek, etc.) hotdogs and spaghetti (which you call getti).  But even though you have your favorites, you will eat almost anything and proof of that was this evening when you were sucking on the calamansi while stating that it was "maasim" but going on about it repeatedly, even if, as you had said that it was sour.

     Your toothbrushing buddy is Daddy and Mommy is your yakap pillow whenever it's bedtime.  Even at this age, it already appears that you have inherited moms OCDC tendencies but that's okay because we know that it helps you push yourself to do your best always.  You enjoy being independent and even your teachers say that many times, you would push their hand away whenever they try to help you with something in school.  That also happens to us when we try to help you put on your shoes or whenever you do something with your hands.  :)  Yup, you're a big girl now but no matter what happens you will always be our baby.

     We pray that as you grow older, you will always feel the love and pride that surrounds you.  May you always strive to do your best in everything (as you are doing right now) and may you always remember that the true worth of a person is not determined by what's on the outside.  It's what's inside that always counts.  PS, please try to be less cranky towards your big brother.  Yes, he smothers you a lot, but that's only because he loves you very very much and that he takes his being a big brother to you very seriously.  So give him some slack, okay?

                                                                                                    We love you,

                                                                                                     Dad & Mom

       

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.

Weaned!!!

I've been exclusively breastfeeding Nina since she was born and it has been a source of pride and joy for me to be able to do that.  When she turned 2, her pediatrician felt that she was underweight and needed to gain more pounds especially with her forthcoming surgeries so we were forced to supplement with formula milk.  But, it was always a given that come night time - it would be her time to directly feed from mommy.

Lately, I've been having some health issues that required my intake of a certain medicine which was not advisable for breastfeeding moms.  Of course, I initially chose not to take the meds so I could continue to provide milk for Nina.  But, their dentist had recently advised us that we needed to make sure that her night time feedings are lessened and that the last thing she does before going to sleep was to brush her teeth.  If I continued to breastfeed this would not be possible because aside from the fact that she's latched on to me until she falls asleep, most of the time she's latched throughout the evening!  It's come to a point where in these past few evenings it has become harder for me to pry her away.  I often have sneak out of bed to sleep on the floor so that she wouldn't latch on and also so that I can get some sleep.  But then after just a few minutes, she wakes up and cries for me and I have to go back to our bed.

So, I finally decided it was about time to wean her.  We tried to condition her about it the first few evenings but it didn't work.  I tried placing Calamansi but the taste didn't seem to bother her at all.  Eventually, we were able to find a solution that worked.  I started last night but wasn't quite as successful.  But tonight, it worked perfectly.  To top it off, Nina now sleeps while hugging me!  And that's one position that I can't and will not even complain about.

Yes, I think she has been weaned.  Aside from finally being able to take my prescribed medication, perhaps now, I can sleep better :)  Come to think of it, with a baby as sweet as her hugging me, how could I not?

Marked Improvements

It's been a while since Nina started with her speech therapy classes.  Although I was initially not that pleased with her therapist because I felt that she was unable to maximize their (expensive) 1-hour sessions, I have to admit that she has contributed a great, great deal in Nina's progress.

These days, our little girl is like a parrot constantly mimicking what we say and what we do.  She has always been quite observant but these days, she constantly tries to make use of her growing vocabulary to point out objects and places around her.  We were surprised at how clearly she was able to say "umbrella" one time as well as other words like "fishy", "ayaw ko" (I don't like) and "hati tayo" (let's share).  Her teachers are surprised as well.  Of course, there are some words that are still difficult to understand but I know that with constant practice and with God's grace, she will continue to improve.

We are particularly proud that she has maintained her independent nature and would most of the time, refuse our offers for assistance, insisting that she be allowed to do things by herself, in her own way.  Yes, she is stubborn, but I believe that it's her stubborn determination and independence that helps advance inspite of the challenges she has ahead of her.  Now that's what you call a WINNER in the making!

Nina, you make everyone around you so blessed and so proud to be a part of your life.  You really are an inspiration!

our Little Miss Sunshine