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.

My Favorite Toys

In this day and age where practically everything runs on some sort of electricity, I've taken a special liking to toys that run, not on batteries, but on the children's imagination.

They say that the best toys are those that do not do anything on their own, and I agree.  And I kinda think that my kids approve as well.  Their building blocks, wooden blocks, puzzles and smart cubes are their constant favorites and they never seem to run out of ideas playing with them.  Never mind if they've had these since they were a year old - they never seem to go out of style.  Battery operated toys often loose their calling after a while and more often than not, we end up with corroded batteries.

Stuffed toys?  Please, give us a break!!!  I have half the mind to donate their stuffed animals because of all the dust that they accumulate (hello allergies!) except that I'm forced to keep them for now for sentimental reasons.  We have tons of elephants right now that even I can't seem to part with.  So for now, I will have to make do with keeping them in a large plastic bin until I finally figure out what to do with them.

Meanwhile, I'm dreaming of adding more to their collections.  I wouldn't mind adding their sets of building blocks, Legos and puzzle sets (the more the merrier!) because every time they start playing with it, they keep coming up with more and more imaginative ways to build and create.

smart cubes, construction toys, legos, puzzles and any kind of wooden blocks
never go out of style as far as these 2 are concerned

magnetic alphabets come in handy not only to teach spelling and reading but also for sorting excercises

shape sorters can teach you shapes, colors, patters while developing motor skills.
OC Alert! Notice how someone has to make sure that the shapes are all aligned

wooden/plastic puzzles - it doesn't matter if they are the cheap ones from Divi, my kids can play with these for hours

from developing creativity to problem solving to motor skills - all in just one toy

Christmas is fast approaching... what about you?  What's your favorite toys?

Of 6 year olds, Crushes and Marrying

I usually blog about Nina so this time, I'm giving a little cybertime to Kuya for a change.

Hubs and kuya returned from the annual field trip today and hubs had a lot to tell.  Normally, i am the one who usually goes with the kids since my schedules are more flexible.  But since my sister and I were scheduled to watch Wicked on stage and i wasnt sure if i could make it back in time, hubs ended up going with them instead (aside from the fact that Kuya said he wanted Dad to be the one to go with him).

Before i start with my story, let me give a little backgrounder first... Kuya's preschool actually belongs to an exclusive girl's school campus.  But because the neighboring all-boys school beside them did not offer pre-school courses, the administrators took the opportunity and made their pre-school co-ed.  So it goes without saying that most sections in the pre-school have more girls than boys.  And that is where i will begin my story.

Hubs told me that while the kids were wandering around the flower farm, a mother of one if Kuya's classmates approached him.  She casually mentioned that our son was known to kiss a lot of his female classmates.  Somewhat embarrassed with that revelation, hubs explained that we have been conditioning Kuya that the only females that he should be kissing are mommy and Nina.  Hubs further explained that Kuya has always been very affectionate to his little sister and his female cousins.  Apparently, the mom wasn't at all bothered by it and even said that her daughter "liked" it and that she had a crush on our son.  It appears that our little boy has his own following among the girls in the class, her daughter being one of them. The daughter apparently went on and declared to her mom that she liked Kuya because he was "so smart and that she wanted to marry him."  Thank God I wasn't there because i would not know how to react to something like that.  In  act even up to now, i still don't know how to respond to that.  It appeared to hubs that what the mom had to say was true because aside from the fact that the little girl kept following (and sometimes waiting) for them, while at the bus, kuya had a captive audience of 3 girls intently listening to his stories and laughing at his antics.  Uh oh....

My baby is a 5 year-old hearththrob.  A girl has declared her intentions of marrying him.  I am going over my head on this.  I am perfectly aware that this is nothing serious and that there is no reason for me to over-react.  Hey, they're just 5 aren't they?  Sure, but that that isn't my point.  When i was 5 the only things on my mind were playing and trying to get out of having to do schoolwork or chores.  The gender of the other kids that i played with were inconsequential/ignored and crushes, more so marriage, were all alien concepts to me.  What is happening to our children?  Why are their thoughts polluted with ideas of crushes and marriages?  Aren't they supposed to be innocent still at this age?  I know for a fact that during my time, crushes only became 'normal' when we were in the late elementary levels and in high school.  What happened between then and now?  

Media.  Yes, i blame the for robbing the innocence out of children - television commercials that focus on boys giving them more attention if the wear this, use that or even eat this particular brand, print ads that objectify women rather than focus on the product at hand... All these make it appear to our kids that its okay for them to act like adults, to behave the way adults do.  And in the course of that, they grow up much too fast and leave behind the childlike innocence that can only be found among them.  When you move the clock forward, you can never bring back the minutes and even the seconds that you lost in between.  There is no turning back.  

I know my son will eventually be the object of crushes by other girls, eventually he will probably find a girl whom he will shower with the same affection that he does for me and Nina.  But not now.  And perhaps maybe not in the next 5 years.  I want him to enjoy being a kid, being a child.  I want him to remain pure, unabashed, and untainted by commercialism and materialism for as long as it is possible.  Perhaps by that time, i will be prepared the next time a parent comes up to me and lets me know that her daughter is crushing over my son and has declared that she wants to marry him.

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!  

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

How Do They Do It?

I just realized that it's been a while since I last made a post here.  The truth is that I've made several drafts on my laptop and several more in my head.  But then things just start coming in and everything seems to need more attention and then before I know it, either the topic is outdated or I've complete forgotten about it.  Which makes me wonder... how do mommy bloggers do it?  How do they manage to write up a lengthy and interesting article while managing their household?  I often convince myself that I can write something while the kids are asleep.  But even during those times, the more "important" stuff still gets in the way.

Take for example the fact that last month (August) was Breastfeeding Month.  While it was during the time when I was weaning Nina from breastfeeding, we still managed to join a group that had Breastfeeding pictorials taken - just to have a momento of such a special time in our lives.  I had started making my post on that, but as you may have guessed, something else came up and the post got shelved.

So, to all the mommy bloggers reading this post, I tip my hat off to you for doing something that for me seems impossible!  But I hope that time will come when I can figure out your secret so that this blog will be alive more often.

Until that time comes, here are some photos taken from that event, just to let you know that we're doing wonderful (although quite busy).  Hopefully, I'll be able to come up with an interesting update soon.

For now, enjoy the photos and remember, September is Craniofacial Awareness Month!  

One Fine Weekend

During day three of a 4-day weekend here in Manila, we decided on a quick trip to the zoo so that the kids would have a special weekend somehow.  It would have been a great time to go out of town but because hub’s office does not follow the local holidays, he didn’t have a long weekend like we all did.  In fact, we only had the morning of Monday free because hubs had to work that evening so we needed to give him enough time in the afternoon to catch some sleep.

The zoo, we felt, was one of the best places to bring the children because it allows them to enjoy themselves and learn at the same time.  Among the zoos we had visited were the Manila Zoo (which was on the top of our list only because they were the only ones with an elephant),  Ark Avilon (a bit expensive but interesting because you can feed the animals and their area is very clean and the animals are healthy), Tagaytay Highlands (also expensive but we had a sponsor then but the animals really looked emaciated except for the pot bellied pigs) and Residence Inn (a bit far but very nice).  Among those places, it seemed that Ark Avilon and Residence Inn maintained their animals quite well.  Obviously, we have done our round of the zoos here in Manila and that has left us with 2 remaining options: Avilon Zoo and the Malabon Zoo.  Malabon Zoo was a hands down choice for us because the entrance fee was only P120 per head compared to the P400 per head fee for Avilon Zoo.

In terms of appearance, I felt that the Malabon Zoo could use a lot more improvement (like better signages, paticularly about the animals and less quotations that I believe are hardly even read).  But compared to Manila Zoo, their animals looked well maintained/fed and their surroundings were much cleaner than Manila Zoo. It was also an added bonus that the place was filled with trees that kept the walk ways shaded and cool inspite of the humid Manila weather.  Malabon Zoo is the only one that has a live Grizzly Bear in its care – and it was quite impressive even if the bear practically ignored the people ogling at him and the kids roaring at him.  There were a lot of different varieties/species of fish and birds as well and lots and lots of tigers.  Of course, there were two layers of screen around most of the animals so it was quite safe for kids to roam around the premises.  Our children enjoyed seeing the tigers up close and would try to get their attention by roaring out load.  I guess the tigers have gotten used to all the attention because they too barely paid attention to our two tiger-wannabees.  Some of the tigers were in a glass enclosure so we were able to take photos where it seemed as if the tiger was actually just behind the children – cool! 

The kids also enjoyed feeding the ducks, the deer and the fish with the animal feed that you could purchase from the premises at only P30/bag.

In Manila Zoo, there was one area where you could have your photo taken with the colorful parrots.  In Malabon Zoo, you can have your picture taken with the pythons and an orangutan named Marimar.

Marimar the Orangutan

My answer was a quick no to the offer to have a picture taken with the pythons but hubs and Kuya were up to it so we they readily went up the stage to have their photo taken.  I was concerned that Kuya would freak out but as it turned out, he was very brave even when the snake was placed on his dad’s shoulders.  When the black one was added, Kuya suddenly cried out loud and started struggling to get loose.  Apparently, the tail of the yellow python found its way to his belly button and was trying to find a cozy spot.  It was cold and because Kuya was ticklish in the belly button area, he was not at all comfortable with that feeling.  That was the only reason why he cried!  

Even our yayas were brave enough to have their picture taken with the snakes.  It was only Nina and myself who declined and even if we were the only ones, I maintain that I don’t regret having missed that opportunity at all.  No thanks!

All in all, the kids enjoyed their weekend extension.  We only stayed at the zoo for about 2 hours – just a  short trip but it was worth every minute.  Lesson learned:  there are a lot of activities for families to do on a long weekend that won’ cost you an arm and leg.  The most important thing is that you get to bond together and create happy memories that you and your children will remember for a long time. 

Summer Activities

Kids all over Manila are having their summer break right now and with school out, I just needed to come up with some activities at home to keep the kids entertained rather than have them sit in front of the television the whole day.

The weather has been incredibly hot since April so naturally, we just had to bring out the inflatable pool.  In as much as we’d like Nina to have as much swimming time in the pool, we needed to be careful that she didn’t catch a cold since her colds tend to progress to a cough and then at times to pneumonia.   Poor baby, she couldn’t swim as much as she wanted to.  Our strategy was that we allowed her kuya to get in the pool earlier than her and after say 10-15 minutes, then she could join him.  Then to avoid any jealousy, they had to get out simultaneously.  Of course, for Nina it was much harder to get her out and we’d often end up with a crying baby who would say “miming” in between sobs. 

Considering our fear of her catching a cold, we couldn’t let them go swimming everyday so one weekend, we decided to take them out to Tagaytay Highlands where I used to work.  I had fond memories of the Animal Farm in Highlands back then, especially of the orangutan named Chino since he was kinda cute and would often have photo ops with the children.  Of course, that was something like 10years ago so imagine my shock when I saw how huge Chino had grown!  Still the kids enjoyed themselves and that was what was important.  Aside from seeing the animals up close, they got to ride on a horse (both real and imaginary) and they got a kick out of that as well (tho not literaly).

We also included them in a free summer pre-school given to kids where I work.  The experience was nothing new to Kuya since he attended the program last summer and some of this year’s students were his classmates last school year.  Nina on the other hand, although it was her first time, did not have any adjustment problems and proved herself ready for school.

Of course, we still did the usual drawing, play doh, building blocks, coloring and puzzle activities, but I was running out of ideas - quickly!  

Then I remembered finger painting!  My friends had given me a recipe for homemade fingerpaint but with Yaya 1 on vacation and me trying to catch up on work and cooking, there was simply no time for me to make it.  So I got whatever was available in the bookstore.  Luckily, we had a big roll of paper in the house which served as their canvass as well as protection for our floors.  The end result?  Let’s just say that for Nina it became a combination of Finger Painting and Body art.  She had lots of fun tho.  So with just a few weeks left, I still want to think of other activities that they can do… any suggestions?