Musings of a mom raising a child with Apert Syndrome.
Inspite of her physical difference from her older brother, Nina is just like any normal little baby. As we are all created in God's image, we would like her to grow up confidently declaring to everyone that she is perfectly created by our Heavenly Father.
Six months ago, Janina's pediatrician, who also happens to be a Developmental Pediatrician suggested that she undergo a Developmental Assessment to find out which areas we would need to focus on in terms of therapy. At that time, her scores showed that she was functioning like a 10month old child over-all and not like an 18month old. Her weak areas were Hearing and Speech - particularly the Expressive side (where she was merely like a 6month old baby); the Eye-Hand Coordination (she hadn't had the syndactyly release yet); and on the Performance Scales. Because she scored low on 3 scales, the was considered to have Global Developmental Delay. The pedia suggested that we go back to the Occupational Therapist so that the home activities created for us would focus more on developing her weaknesses.
The truth was, we were never able to go back to the OT. First Janina had her hand surgery and the wounds needed to heal first. Then we got busy, then the therapist got married and went on her honeymoon... and then it was time to go back for another assessment.
Imagine our surprise this morning when she got good scores on all scales except on the Hearing and Speech Scales! Even her doctor was happy about it.
So although Janina understands our conversations with her, she really has difficulty in forming the sounds that would make her words audible. She tries, and she tries very hard. But to us, all her sounds come out the same.
The doctor says that it's possible that she may have Speech Apraxia - which according to Google is a motor speech disorder where children have problems saying sounds, syllables and words. The muscles themselves are not the problem, its the area of the brain that tells the muscles how to move and what to do to make a particular sound or series of sounds that is either damaged or not fully developed.
When Janina was born and her sutures had not been opened up yet, we distinctly remember being told that from the MRI and CT Scans, it appeared that the portion of her brain that was compressed by the lack of space was the portion of the brain that affected speech. That explains everything.
Of course, therapy will be next on our agenda and our Pedia referred us to someone whom she feels will be able to help Janina "learn" how to make the correct sounds.
For the meantime, we are still jubilant at her miraculous developmental growth. I'm sure that will all the prayers coming her way, the Lord and Mama Mary listened and made sure that she would be a living testament to the healing powers of prayer.
Congratulations on turning 2! Whenever I look at you, I can’t believe how fast time has flown. Even your Titas and Titos are surprised at how much you’ve grown.
Did you know that when you were born, the doctor said you had brain atrophy? But none of us wanted to believe that, especially your Momma. After you had your first surgery, it was obvious that your brain was not atrophied because you could easily understand and copy all the things that we do or say. We know it was because Papa Jesus listened to all our prayers. Looking at you and watching you grow, I know that your determination and your strong personality will allow you to reach whatever dreams you have. You make Daddy and me very proud because you’ve showed us that nothing can stop you from doing something that you set your mind on. We're glad that you don’t give up easily, we're glad that you know what you want and that you try your best to get what you want. Keep it up, honey and know that your daddy, your mommy and your kuya will always be behind you every step of the way.
Guess what? At this very early age, you are already showing signs of how much of a girl you are. Initially, Dad and I had fears that you would turn out to be a tomboy because of how much you loved to play with Kuya’s cars. But lately, you’ve become fascinated with your clothes, shoes, clips and bags! You’re becoming kikay, my little one, and it makes you more endearing to all of us.
I love the fact that a simple look from Daddy can turn you giggling – you’re such a Daddy’s girl! But don't worry because I don’t mind --- I was also a Daddy’s girl to your Mommo when he was around. Hehehe. Remember that aside from Daddy, your Kuya loves you to bits so please, be nice to him even if he kisses you so much to the point that it already irritates you. Yes, your Kuya loves you more than anything and you should learn to love him as much, or at least to appreciate his affections toward you. When you become adults, you will appreciate having him around, trust me.
So, Happy 2nd Birthday once again! Keep learning, keep trying, and know that we will always be here for you no matter what. We love you!
I meant to write this as soon as I started this blog except that with all the other things that I had to attend to, updating this post had taken a back seat. But because Nina will soon be celebrating her 2nd birthday, it’s only but fitting that I put up this post before she celebrates another year.
I belong to this wonderful e-group of “newlywed” couples called n@wies. The group started as a resource group for couples who are in the process of planning out their weddings, hence the name Weddings At Work or W@W. Once the wedding preparations end, you then transition to the Newlyweds At Work (N@W) of which I am now a member. This wonderful group allows members to share experiences and pointers about almost anything from parenthood, sale alerts, to travel tips.
It is to this group that I share details of Kuya’s first birthday and his many milestones as well as my many concerns and prayer requests all with regard to Janina’s condition. At one point, I posted a rant about how I felt about not being able to provide Janina with a big party for her upcoming 1st birthday. You see, I had shared reviews about Kuya’s 1st birthday party – he had a big one complete with balloons, a magician, games, lootbags and lots of guests. In as much as we wanted to give Janina a big party of her own, she had just come from surgery and we needed to be practical with our spending habits.
Little did I know that the post had become a catalyst for the group to put together a special gift for our little girl. One evening, my friend Benz, whom I had known in college (and coincidentally was the founder of the group) dropped by the house to deliver a breastfeeding pin/badge that she made for all breastfeeding moms including myself. To my surprise, she was not alone – several n@wies were with her and they had camera’s and video cams with them. They came not only to give the badge but also to present us with a letter:
They practically took care of everything and all we needed to do was pick out a date, the theme and finalize details with all the suppliers they had contacted. Needless to say, I was overwhelmed-speechless with all the emotion that was going through me.
The day before the party, Benz contacted me to check on how things were. Her call came as I was about to leave to pick up Janina’s dress from the dressmaker and she volunteered to make arrangements for the dress to be delivered to the house instead. When the dress (or should I say gown) arrived, along with it were dozens and dozens of gifts and cards and letters from n@wies who wanted to make sure that Janina had a grand celebration. It was like Christmas all over again – multiplied several times more for us!
Nina surrounded by all her gifts from the n@wies
My little girl’s party was nothing but big – it was GRAND.
It was more than I could have ever hoped for her to have. Truly she is blessed to have so many loving people around her and we are blessed as well to have been given such a beautiful child to take care of and to inspire us to share a part of ourselves to others.
Nina surrounded by her gifts AFTER the party
Note:
Since that time I have received several messages saying that because of my post they learned a lot about Apert Syndrome or that they were blessed with our story.
Because of that, I now have this dream of putting up a local support group for families dealing with Apert Syndrome as well as other Craniofacial syndromes. My wish is to be able to establish a support group for Filipino families and to later on create awareness about Craniofacial syndromes so that people would learn to understand them more and not to discriminate them. I know that in time, this will all become a reality.
Party Credits:
Party Coordinator, Balloons & Tarp – Jacque Tan of Partyboosters
Lootbags, Souvenirs and Prizes – Sheila Contento of Let’s personalize it, Leslie Garcia, Veronica Pantig, Pia Pabelico-Rebenque, Joefe Cayabyab, Inday & Norman Legato, Jennifer Lo-Gana - kiddie stools, Just for Fun, Robby Rabbit
Other food carts and sponsors – Camille Mortiz
And most of all, the generous n@wies spearheaded by Benz (did I forget anyone else? I sincerely hope not.)
a bound compilation of all the emails that went around just to make the party happen
We love you guys! You have blessed our lives and the life of our precious daughter immensely. We are humbled by your generosity and we hope that we can be as big a blessing to others as you have been to us.
I'm usually in a rush to put the kids to sleep at night so that I can squeeze in some work or some "me" time. Tonight however, Janina was in no mood to sleep even if the lights and TV had been turned out and her kuya was already in dreamland. I realized that I had not been able to bond with my little girl as much as I wanted and should so instead of bugging her to sleep, I did what used to be the unthinkable for me -- I played with her. I try to avoid playing with the kids at bedtime because sometimes, they tend to forget they're sleepy and then become overly cranky (because of sleepiness).
We played peek-a-boo, she asked to be tickled (and she tried to tickle me back). Just simple forms of play and cuddling up that I had missed the past few days. I love hearing Nina laugh and my heart just melts everytime I see her smiling face.
The next thing I knew, we were both asleep and when I woke up, she was latched on to me, sleeping contently. I checked the watch and was surprised that on 15minutes had passed! I was glad I decided to play with her instead. I guess it was one of those nights when the Lord gave me a reminder about the more important things in life and that I needed to stop and smell the roses. :-)
We spent our day yesterday at the breathtaking Pico De Loro Cove which was South of Manila with hub’s family. Hamilo Coast in Nasugbu Batangas was a perfect getaway for the family and the kids. The weather was simply perfect and it was the first time that Janina did not have to worry about staying cold-free for any pending surgery so she finally got to swim as much as she wanted to. This was her first time to actually swim (outside the kiddie pool we have at home) so it was a big day for her.
She was hesitant at first to get into the pool (yes, it’s a beach cove but they have swimming pools at the side as well) because the water was a bit chilly. Eventually, she got used to the temperature and began splashing and shouting all around. She didn’t mind getting water all over her face; in fact, I was the one who kept wiping my face because water kept getting into my eyes.
As Nina and I were playing in the water, it happened. Something that I had dreaded about ever since Janina came into our lives. A little boy, about 5 years old came up to us and said to me: “Bakit ang pangit nung baby?” (Why is that baby ugly?). I was stunned and had to ask him to say it again to make sure I heard it correctly.
After he repeated his question (apparently, he found nothing wrong with it), I had to fight the urge to put the kid’s head underwater or to even show him what ugly really was. But since he was just a child, I had to be nice. I told him in my kindest voice (and trying not to be condescending) that Janina merely looked different in the same way that he looked different as well. The parents were no were near us so I was sure they didn’t hear him say that. My response seemed satisfy him because he didn’t ask any more questions. Besides, I simply turned Janina away and began playing with her just as we did before the nasty comment was given. At the back of my head, I wanted to tell him he looked like a pig ready to be grilled at the Club’s restaurant and that I kinda spotted the head chef coming out of the kitchen looking for him and that he better run and hide. Thank God I was deep in cold water because my face was growing hot. Even minutes after, my mind was spinning with all the other possible answers I wanted to give just to get back at those hurtful words– the best of which was: “Honey, she isn’t ugly, you are the ugly one!” Ooh, the joy of seeing this mean boy’s face change with that winning remark!
I looked at my daughter and was extremely grateful that because of her developmental delays, she had most likely not understood what the little boy said. I stared at her face, which to others may seem odd, and realized that this would not be the first time that we would encounter this. I’m sure there would be other children or even adults who would be unable to see beyond the physical appearance and simply blurt out unfeeling comments. I felt sad for the little boy and worried for my little girl. To us, she is the prettiest girl ever and I don’t want other people to shatter her world with cruel statements like that. I have to admit that Janina does look very different from children her age, her head appears bigger and her eyes are not deep-set like most kids. But she has a smile can take your breath away, her laughter will make you smile and those eyes, though bulging, shine with so much happiness and zest for life. Unfortunately for the little boy, he didn’t see any of these.
I know I could have handled the situation much better. Every time the little boy would come near us, I’d try to shield Janina away from him, hoping he wouldn’t see her hands as well because if he made another comment, I might not be able to contain myself from giving out a nasty remark. Maybe next time, I’ll have the presence of mind to respond in a way that would teach them about children with special needs and how they are not so different from everyone else. Hopefully so. But then again, I also wish there would not have to be a next time.
Have I ever told you how lucky our little girl is?
Well, to top things off, she has the best set of doctors available in the country. And these doctors not only have the brains and the skill, they also have the heart.
Five weeks after her syndactyly release, things are looking nothing but great for our little girl.We meet up with her hand surgeon either once or twice a week just so he can check on her progress as well as make sure everything is okay.He has taught us hand exercises to save us the additional cost of having to go to a therapist and has assured us that we can text him anytime (except to greet him a happy birthday or Merry Christmas).To top it off, he refuses to charge us consultation fees during our weekly visits!
The secretary was once telling me that she questioned Dr. Castillo as to why he was passing on cleft lip patients to Dr. Tansipek when he was capable of performing the surgery in the first place.The response?“Why will I do something when I know that someone else can do it better than I can?”Now that’s what I call true service.I wish other people would have the same attitude as well rather than biting off more than they can chew.
The World Health Organization states that Pneumonia is the leading cause of death in children worldwide. So imagine the fear I had when I found out that Nina had it. She had terrible colds the other day and soon it had progressed to coughing. The next day, noticed that she was breathing heavily and that's when I sent an SMS to her pediatrician. Because the pedia was out of town, we were advised to see another doctor right away. We were later on advised to proceed to the ER so that they could nebulize her. If her condition would not improve, she had to be admitted.
Thank God she improved after the second nebulization. My daughter loves moving around and confining her to a hospital room would definitely upset her.
feeling better at the ER
We were able to bring her home from the ER but had to nebulize every 4 hours round the clock. Eventually, the cycle was moved to every 6 hours with an addition of another stronger (but expensive) medicine until she improved.
About the same time, we noticed that her Kuya still had a cough even after taking antibiotics and an anti-allergy medicine so x-rays and blood tests were done. To our dismay, he was also diagnosed with pneumonia! Despite the diagnosis, kuya was still his energetic self but hearing the diagnosis still made me worry.
We're done with Nina's medication and Kuya's round of antibiotics will soon be over. I am hoping that after this, it'll be a while before I visit the drugstore/pharmacist again.
Although the pneumonia that my kids have was not as critical as I imagine pneumonia to be, I know that I still cannot erase my impression of this infection as a deadly one.
"Welcome to the Milk Mama Diaries Carnival (July). For this month, we join the National Nutrition Council - Department of Health in celebrating Nutrition Month with the theme "Isulong ang Breastfeeding - Tama, Sapat at EKsklusibo!" Participants will share their experiences in promoting breastfeeding or their tips on how breastfeeding should be promoted. Please scroll down to the end of this post and check out the other carnival participants."
Honestly, I’m bothered by the fact that in our country, many Filipinos, most especially the marginalized ones, consider formula feeding as some sort of a status symbol. Imagine, most of them hardly have enough to pay for one decent meal in a day, and yet they would rather buy a can of expensive milk instead of making use of something that they can get for FREE. And we aren’t even talking about the benefits of breastmilk as opposed to formula milk.
According to the UNICEF data of 2005-2009 (for some reason, I couldn't find a more recent data), only 34% of the newborns are exclusively breastfed below 6 months. For a population of about over 92Million (for 2009), that is such a small number.
I believe that our government really has to work on educating the masses about this. I am also very much disappointed at the celebrity moms whom I thought were breastfeeding advocates but later ended up endorsing a certain milk brand. Regardless if the milk they endorse is not for newborns, I still feel that they could have used their position of influence over their followers to do something good– like educating them on what’s good for the health of their children and their pockets as well. I’m pretty sure these celebrities can very well afford to give up one endorsement in exchange for heeding one’s social responsibility. What a big loss in opportunity.
One night as I was watching TV, I chanced upon a show of Gladys Reyes where Bianca Araneta-Elizalde was a guest and I admired her for being vocal about her breastfeeding advocacy. Maybe it was just me but I felt a bit of tension between the host and Bianca since the former was an endorser for formula milk for children. If only Bianca had mass appeal, I’m sure a lot of people would be inspired to breastfeed their children as well. Which leads me to thinking, why can’t we encourage these celebrities (especially the ones who have a huge following with the masses) to go public with their choice to breastfeed? I know government cannot afford to give them talent fees as big as the milk manufacturers but if it’s for a good cause, I’m sure some of them would have the conscience to agree. Sure, Lea Salonga, Tintin Bersola and many others have been more vocal. But comparing them to Judy Ann Santos, Claudine Barreto, or even Kris Aquino (had she decided to BF), etc. the latter would surely be able to convince more people than the former. As they say in Filipino, “sayang talaga.” If they had only stuck to advocating breastfeeding and declined on accepting formula milk endorsements, they could have helped a lot. I distinctly remember Angelina Jolie's breastfeeding photos were a hot topic back then, as well as that of Salma Hayek breastfeeding an african baby. Imagine the impact this would have on the Filipinos of something like that were to come out featuring today's hottest stars. I'm sure it'll become an instant fad!
They really should get a celebrity endorser. Or better yet, they should come out with a big billboard along EDSA that boldly proclaims Breastfeeding as the cheapest and healthiest milk for babies. (I got that idea from a n@wie that suggested there be a billboard that says Babywearing Rocks!). Wouldn’t it be nice if that billboard should show breastfeeding mothers of all sorts including the “artistas”. That would surely catch the eye of a lot of people (although on second thought we might get into trouble with the MMDA for indecent exposure or something).
Maybe they can get Andi Eigenmann (now that she’s pregnant) to be one of their model endorsers? Personally, I think the billboard would be a good idea. I’d even volunteer to be a part of that if they push through with it, seriously!
Taken during Janina's 1st birthday party
But knowing that change always starts from within, for the meantime, I try do my own share in promoting breastfeeding. I’ve never hesitated to declare to anyone and everyone that I breastfeed and I like talking about it and sharing my experiences with it. If I can, I’d gladly encourage anyone to breastfeed. Which is also why I am not shy about openly breastfeeding even when we are not at home. I’ve fed my babies in the mall, at church (many many times), in a restaurant, at a party, in the car, in the office, while waiting for my turn at the doctors and even while in a business meeting (with my friends), and in many other places that you wouldn’t imagine. I know it isn’t much but it’s something and most importantly, it’s a start. I may not be a poster girl or a movie star but maybe, just maybe, by breastfeeding in public, I can encourage at least one more mom to consider breastfeeding her baby instead of giving formula milk.
So while we wait for the more influential people in the government to be able to do something about promoting breastfeeding, I will still do my share – I will share to whomever wishes to listen about the benefits of why I chose to breastfeed my kids. Hopefully I’ll be able to fulfill my social obligation.
I hope you check out the other wonderful mommas participating in the carnival, please check out these links:
I am proud of the fact that I have been able to breastfeed both my babies. So when Jenny asked if I could write about breastfeeding a special needs baby, I didn't hesitate.
For the Breastfeeding Carnival for July, we updated my earlier post on breastfeeding to include the syndactyly release. Incidentally, that post was also submitted to the World Alliance for Breastfeeding Action and was part of their April newsletter.
This is Nina's big brother or "kuya". I've always been proud of the fact that from the beginning he has always acted like a big responsible brother, always on the lookout for his baby sister. There was one time when we had just woken up and he got down from the bed to go to his room to get his toys. When he came back, he brought with him a toy for himself and another one for Janina! (Without my even having to tell him to do so).
Sometimes when we're in the grocery, he would point to something and say "Gusto ni Nina yan" (Janina would like that.) I know that at times, he merely projects what he likes and declares it as something that his sister would like but even during those instances, he would always offer it to his sister first.
One time while we were at school, his grandma gave him some Skyflakes to munch on. He got one piece and when he was about to take another, I told him to finish off the first piece before getting another one. He told me in a matter-of-fact tone, that the other cracker was for his dad. True enough, he hung on to that piece until it was time for us to go home. At that time hubs was on the night shift so when we got home, daddy was still asleep. Kuya was so excited to wake up his dad just so he could give his "pasalubong". When his dad was finally awake, he proudly presented the half eaten cracker. Although kuya had wanted to finish the whole piece, he really tried to keep himself from eating it whole just so that he could give something to his dad. Sweet right?
And it didn't end there. Yesterday, I bought him a bag of peanuts. Again he got some in his hand and declared that these were for daddy. When we got home, I saw him holding on to one nut, nibbling on the skin. I asked him why he didn't eat it and he said it was because for Daddy.
I don't know what we did to raise such a thoughtful young boy, I wish I knew but I sure am proud that we did! I hope he stays that way even when we are no longer around.
During the surgery for Janina’s fingers, the doctors had to place a pin on the left ring finger just to give the bones a little support after the split was made. That pin is actually a wire with the end bent into a loop to avoid any injuries. As an added precaution, the surgeon also gave us a plastic cap to tape on top of the finger.
We initially thought the pin came out when the bandages were removed but after the scabs had fallen off, we found out it was still there – which was a good thing. Because Janina now actively makes use of her hands, we need to be very careful that the cap stays on at all times.
Well tonight, I feel was a very lucky night because as I was putting both kids to sleep, I decided to look for the TV remote somewhere in the bed. I was struggling because the room was dimly lit and Janina was latched on while her big brother had his leg on top of me. It was while I was groping around that I found that the cap had fallen off! I shudder at the thought of what could have happened had I not found that. Thank God our guardian angels were working double time tonight.
We were at church this morning and I noticed two kids in front of us who were looking at Janina and whispering to one another. Immediately, my mind raced ahead to what I would tell them if they said anything mean or to how I would try to teach them about being kind instead of being cruel. I guess that's the paranoia and the stage mother in me reacting.
I realized later on that they were not saying anything cruel about her (well, at least nothing that I could hear) so I had no reason to worry. Thank God.
I know I still am a bit far off from that time when Janina will have to mingle with classmates and schoolmates. I dread that time when my daughter will have to experience funny stares and harsh remarks and teasing from other children. As a mother, I can only do so much to protect her from bullies. No matter how hard I try, there will be some things that she will have to deal with by herself. I guess the best that I can do is to give her enough self confidence and love so that even in the face of these, she can simply shrug her shoulders and let the comments pass from one ear to another.
How do I do that? I have no idea yet. Any suggestions?
In a few months you will be turning 2. It's hard to believe how fast time has flown. Has it really been two years since you gave us a big fright?
Seriously though, your dad and I would never trade that day for anything. Just like what I whispered to you earlier as you slept, your coming into our lives has given us this unexplained joy. You make us proud to be part of your life, to be witnesses to your milestones and achievements and to simply watch you do all your antics. Thank you for coming into our family, thank you for being who you are.
You are one amazing baby and you really continue to make Daddy and Mommy very proud!
As mentioned in my previous posts, syndactyly in the hands and feet are one of the characteristic traits of Apert Syndrome. At two years old, a child begins to “learn” how to make use of her hands via grasping, grabbing, holding, etc. This is a crucial time for the development of her motor skills – both gross and fine. Such is the reason why the release of the fingers, most especially the thumbs, need to be done before the child turns two.
I hate to admit it but I have a weak stomach when it comes to blood, and surgical procedures. When faced with bloody situations, I often feel my vision turning black and my knees feel weak. Hence, I am almost always -- a useless body when it comes to this. I once almost fainted once when my dog’s toe nail bled after having it cut at the groomers. I excused myself and sat down pretending I was tired but the truth was that if I had not done so, I would have probably collapsed right there and then.
You can probably imagine how anxious I become whenever Janina has her surgeries. When she had her craniotomy, I was a wreck before the procedure but by God’s grace, I was surprisingly calm and composed throughout the procedure as well as the recovery period. Although I had a little difficulty with dressing the wounds and staring at the staples, her wounds did cause me as much anxiety as I had expected.
I was somehow hoping it would be the same for me when she had her syndactyly release but it was not so. The procedure lasted for about 5 hours. According to her doctor, it only took them 30 minutes to release the fingers. The sewing process however took a while. Because of the fusing, it was necessary for the doctors to get skin grafts from her groin. So when Janina came out of the OR, her hands were bandaged up to her arms (to minimize movement) and she had stitches in the groin area as well. Initially, I was okay with what I saw. The wounds were covered (except for the tips of her fingers) so it wasn’t really that gory. But when all our family had left and it was just the three of us left in the hospital room, I suddenly felt so sorry for everything our little girl had to go through. There I was crying beside her, asking myself if we had done the right thing. Deep in my heart I knew we did, but I couldn’t bear to see her go through it.
Two weeks after the surgery, the doctors removed the bandages and exposed her hand – fingers and stitches galore. My eldest sister helped the yaya (nanny) remove the bandages so I was spared from the initial sight. Janina herself seemed to be surprised at how her hands looked because they say she cried immediately after seeing her hands. But after the initial shock, you could see that she would carefully look at them, inspecting them and trying to see how they work.
Kids are far more resilient than we think because while the stitches have yet to fall off, she is already starting to use them without any fear or trepidation. Sometimes I get scared that she might feel pain but that doesn’t seem to bother her at all. We really are blessed to have such a determined and brave young girl – I have a lot to learn from her still.
Her big brother did not like seeing Janina’s hands right after the bandages were removed. He didn’t want to go near her at first but now, he states matter-of-factly that that Janina has wounds on her hands and that she’s “kawawa” (pitiful). As for me, I try to be brave but sometimes I take a hard look at her hands and start feeling weak in the knees once again. I can’t imagine how other mothers go through this but I realize that we really don’t have much of a choice. I only rest in the fact that it doesn’t seem to bother my daughter so it shouldn’t bother me as well. If she can handle it, why can’t i? Like I said, I have a lot to learn from my daughter. No wonder she has come to bless our lives.
So while we are still in the healing process, my daughter is teaching me each day to be brave. I can’t wait for the time when her hands are completely healed and I can start teaching her to play the piano. I am excited at the thought of working on craft projects together – I already have so much lined up for us to do!
According to the doctor, complete healing would take about 2 months (if I remember him correctly). On the 4th month, we can schedule the second stage of the syndactyly release so that she can have all 5 digits. For now, we need to take things one step at a time. I know that with God’s grace, we’ll be able to handle it.
A sample "Finished Product" of a completed syndactyly release
Because Father's Day is coming up, I thought of importing an old post that I had on my Friendster page. Looking through that blog made me reminisce a lot about the time when hubby and I started going out up to the time we started a family... Looking back, I would never trade places with anyone. I am perfectly happy where I am today.
Being the youngest in a family of five and a carbon copy of my father, it comes as no surprise to many that I am my dad’s pet …the favorite …the apple of his eye … daddy’s little girl. My brothers and sisters, all being mature adults that they are now have already conceded defeat in that aspect. Sorry guys… tough luck! Hehehe
I’ve not been the best daughter though - having had quite a share of fits, bratty/bitchy tantrums (depending on my age then), and whatever crazy stuff you could expect from a child trying to gain her independence and leave a so-called mark in the world.
Through it all he’d just be there, quietly watching - never failing to show his support whenever he can. It was therefore difficult later to on watch what I used to recall as a gentle but strappy and energetic hero slowly deteriorate into a frail and helpless man. Gone were the times he and I would engage in a tickling frenzy or when we would share secret signals and end up trying hard not to laugh so that the others won’t notice. Rather than him giving me advice on what to do at work we would often find him staring blankly into thin space - somewhat like being in a world all of his own. We would make efforts to include him in our dinner table conversations, trying hard to be patient in deciphering what he was struggling to say. But it was no longer like before. Age does that to everyone. As children, it never crosses our minds that someday rather than having our parents taking care of us, the tables would turn and they will be the ones dependent on us for their simple needs. It was difficult and it was heartbreaking - to have to see a stalwart idol slowly breaking before your very own eyes. Through it all, my father succeeded in doing something that he had wanted to do all these years - and that is to bring the family closer to one another.
My dad is no longer with us but we take consolation in the fact that where he is now, there is no more pain or suffering - only peace and comfort. Sadly however, I will never get my wish that he be the one to walk me down the aisle. But I know that wherever I may be, whatever I do, my dad will always be with me. He (and my mom of course) made me the person I am today and person I will become until I pass on from this life. The love my dad has given us has made a great difference in our lives and even though I’m all grown up now, in my heart he will always be my "daddy" and I will never be ashamed of the fact that
I found this posted in one of the forums one time and thought it was something worth sharing to everyone. Apparently, this was copied from a T-Shirt somewhere. Whoever came up with that shirt, thanks!
1. Mammals are great mothers.
2. Parenting is a 24 hour job.
3. Good things come in all sizes.
4. Our choices have consequences.
5. Some people do have to work harder than others to succeed.
6. Time and Patience improve most situations.
7. Feeling “let down” can be the best feeling in the world.
8. To do something well, you must do it often.
9. Man-made schedules do not fit many circumstances.
10. Some “experts” are not.
11. The best things in life are really free.
12. If you follow your heart, you will be a better parent.
13. Children always, eventually, move on to a new phase.
14. The longer I breastfeed, the more lessons I learn.
15. When you know you are really doing the right thing, it does not matter what other people “think”.
For some strange reason, Filipinos, particularly the traditional ones, have this belief about children with special needs supposedly bringing luck to the families that care for them. I was never bothered about this idea until Janina came into our lives.
A few months after she was born, hubs and I attended our usual family gathering. A particular relative (I'm not saying who...) repeatedly kept telling me that Janina would surely bring us luck. It actually came to a point where she casually "asked" for my baby. Knowing that she only meant well, (plus the fact that I had been taught to be respectful to the elders) I took no offense at any of her comments. But on hindsight, thinking about it made me feel bad that society would consider a person as a "lucky charm" above everything else rather than as a human being.
It is without a doubt that my daughter has become a blessing to us, not because we became instant lottery winners (although that would not be so bad, come to think of it), but because she has taught us to become appreciative of things that we would have normally taken for granted. We are blessed because out of the billions of people, we have been chosen to care for this precious little angel. It isn't going to be an easy task - we are well aware of that. But when you think about it, there is a sense of pride in the idea that you were deemed worthy to take on such a big responsibility of being her parents, of making sure that she gets the best care, of being given the chance to become normal - like everyone else. Having Janina has taught me to be more understanding and sympathetic to the plight of other people, most particularly mothers of children with special needs. She has brought our families closer than ever. And most of all, she gave me, a renewed sense of purpose. Because of her, there is a drive like no other, to find a way to make other people aware of what Apert Syndrome is so that they will come to understand those who are diagnosed to have it, and hopefully treat them no differently from you and me.
So please, my daughter isn't some lucky charm like a rabbit's foot or a shark's tooth. She is a blessing -- not because of what she has given to us but for what we hope to be able to give her.
Syndactyly is one of the characteristics of a patient with Apert Syndrome. Simply put, it is when the fingers and toes are fused together. While the bone structure underneath the skin may (or may not) be in tact - meaning there are bones for the fingers or toes, they are fused together by the skin. There are actually several types of syndactyly with some hands being referred to as rosebuds.
Nina's hands were one of the first things that caught the eye of the doctors when she was born. I vaguely remember my OB telling me that her hands looked like they had mittens on. It is ideal for Aperts patients to have the digits or fingers separated before they reach 2years old because it is at that time when the child really starts holding/grabbing things.
We meet with Nina's hand surgeon today so that we can finally schedule the separation of her fingers which at this point she is eager to start using.
Our doctor, a plastic surgeon and hand specialist is suggesting that he only separate the thumb for practical reasons. But to this day, we are adamant that we want Janina to have the semblance of a normal life as much as possible. She's a girl and I'd like her to have the chance of wearing rings later on, of playing the piano and of typing albeit in whatever manner/speed that may be. I refuse to consider my daughter as a disabled child because she is not. She is special - that is for sure, but she is definitely not disabled. The doctor says that he prefers to consider function rather than aesthetics. According to him, having the additional fingers would not improve the function of her hands that the most important thing is just for her thumb to be separated. While I respect his opinion, I do not want to put a limit to my daughter's capabilities, more so to what God is capable of doing in my child. I believe that if the Lord wants Janina to have full use of her fingers after surgery, He will allow it. If my daughter wants to be a concert pianist - she can be one, regardless of how her fingers would look like. The most important thing is for her to have all five fingers (of course if that is possible).
So armed with prayers to Mama Mary, Blessed John Paul, and of course to the Lord Almighty, we will face the doctor today to inform him of our decision -- that we want our daughter to have all five fingers if her bone and nerve structures will allow it.
Wish us luck! We will definitely keep you posted.
~@~
PS... It's amazing what prayers to Mama Mary can do! We met with the doctor this afternoon and he greeted us by simply asking us what we had decided upon. He further added that he will do whatever we want and that he just wanted us to be fully aware of everything so that we would not expect the impossible. For some reason, both hubs and I left his clinic feeling pleased with the doctor. Yup, another answered prayer courtesy of Mama Mary!
We've scheduled Janina's surgery for June 7th at 7am (Manila time). Please do not forget to keep Janina and her doctors in your prayers.
When your child does not follow the usual pace of growth and development like other children, you tend to be extremely grateful about little things like their first smile, the first time they responded to you, or even the first time they copied your actions.On my part, I see it as God’s gentle reminder for me not to take things for granted and to be appreciative of the little miracles that we encounter along the way.While in the past, I was not as ecstatic when Kuya imitated my actions or when he danced to a familiar tune on television, with Janina, it all becomes a cause for celebration.Because each of her actions tell me that she is learning, growing, and slowly becoming all that we hope she would be – albeit at her own pace.That enough is a perfect reason for me to be thankful. :-)
Once upon a time, three angels were busily working in the miracle factory. They were responsible for wrapping up all the little miracles and sending them on their way. Normally they wrapped each one in bright, sturdy paper with big, shiny ribbons. They stamped it with a delivery date and away it would go to the parents who eagerly awaited its arrival. Things usually ran pretty smoothly. One day, however, down the conveyor belt came a little miracle that made the angels pause. "Oh my," said the first angel "this one's um...well.. .different. " "Yes, she is unique" said the second angel. "Well I think she is quite special," said the first angel "but I don't think she will quite fit our standard wrapping procedures." And the second angel added, "And we know she's special, but will everyone else?" "Not a problem," said the third angel "obliviously a special miracle deserves extra special wrapping; and of course we'll send her off with our most heartfelt blessings. Then everyone will see how special she is." "What a wonderful idea!" replied the others.
So they searched the shelves high and low for their finest paper, and their most delicate ribbons. When they were done, they stood back and admired their work. "Beautiful!" they all agreed. "Now for our blessings," said the third angel "for it is time for her to go." "I will bless her with innocence and happiness," said the first angel. "And I will bless her with strength to face the many challenges that lie ahead" said the second angel. "And I will bless her with an inner beauty that will shine on all who look upon her" said the third angel. Before sending her off the third angel, who was very wise, gently tucked a note inside. And it said: Dear Parents,
Today you have received a very special gift.... It may not be what you were expecting,...
And you may be disappointed, angry and hurt. But please know that she comes with many blessings, And, while there may be pain, she will bring you much joy She will take you in a very difficult journey, But you will meet many wonderful people. She will teach you patience and understanding And make you reach deep inside yourselves to find a source of strength and faith you never knew you had. She will enrich your lives, And will touch the hearts of all who meet her. She may be fragile, But she has great inner strength. So please handle her with care, Give her lots of attention, Shower her with hugs and kisses, Love her with all your heart, And she will blossom before your eyes. Her spirit will shine like the brightest star for all to see, And you will know that you are truly blessed.
"Welcome to the first Milk Mama Diaries Carnival (March). To celebrate National Women's Month, our participants share how breastfeeding has changed them as a woman. Please scroll down to the end of this post and check out the other carnival participants."
I have a friend, no let me correct that. I have two best friends who have been with me since the day I was born. These buddies of mine have never left my side (somewhat), not even for a second. How can they? They’re literally stuck to my chest! LOL Is it scandalous to declare over the world wide web that I love my boobs? But I really do! Trust me.
Now I have to admit that I was not as proud of them then, as I am today. Back when my high school classmates started morphing into shapely teeners, my hormones decided to take an indefinite leave of absence. So, while all of them started progressing from training bras to cup A’s and B’s… I was holding an empty cup (A). Laugh if you will but I’m sure you know what I’m talking about here.
Needless to say I had no choice but to live with what has been given to me – emphasis on the fact that I had no choice, please. Life then beacons me to move on and grow up. And grow up I did (sans the height and the “future” – as many Filipinos like to refer to it).
Fast forward to present times, now that I am a wife and a mother, things have changed significantly. Last time I checked I know sport a Cup C nursing bra! Now isn’t that splendid news? What was once an insignificant part of my body, my breasts are now the most important and valuable body part I have as far as my babies are concerned. And that is putting aside the visual side of things. Hip hip hooray for breastfeeding!
I’m no longer self conscious about my two “friends”. I don’t exactly care about their size, I’m just proud that these are not only aesthetics but functional parts as well. And neither am I self conscious about breastfeeding. While some would hesitate to nurse their babies in public for fear of indecent exposures or perhaps at the risk of offending some others – I personally could not care less. I allow my children to feed anywhere and anytime they want (isn’t that what breastfeeding clothes and covers are for?).
It’s a good thing that even after being unappreciated for all these years, they’ve remained loyal to me and my kids. It’s been almost 3 years and my breasts have not failed me yet – not even once! And I doubt if I ever will. Now that’s what I call a real friend.
I believe that I would not be the mother that I am, had I decided to give my kids formula milk. I love the fact that my babies need me – and me alone. I love it that they have to snuggle up to me at night even if it means I wont be able to sleep in a comfortable position. So what? Time will come when my kids will be all grown up and it’ll take a lot of persuasion for me to get them to snuggle up to me or even give me a kiss. I’d like to enjoy this piece of heaven while it lasts.
Although breastfeeding means that I need to be extra selective with the clothes I chose to wear, and that I need to be on constant watch for leaky breasts – these are all but small discomforts against a lifetime of health benefits for my kids.
Do I regret my choice to breastfeed? Not a single bit. I am the woman that I am now – proud and confident, because my breasts have made me realize what really matters in terms of becoming a woman.
PS. Today happens to be my 40th birthday. Just a few months before, I was extremely depressed about my weight and my appearance. I felt that I needed a major makeover so that I could live up to the tag “Fab at 40.” Writing this made me realize that feeling good about myself need not depend on how I look or on how much I weigh. I know I have accomplished much in raising my kids and I have everything there is to be happy about – a good husband, wonderful children, dependable friends and a supportive family. It sounds cliché but its true -- feeling good about yourself is not dependent on how you look, physically but in knowing that you have accomplished great things with what He has blessed you with. And yes, I’m still past my ideal weight – but I still feel Fab at 40!
I know that no matter how hard I try to protect her, there will time a come when Nina will experience teasing from other kids, stares from parents and strangers, simply because she looks “different” from the rest.
I am inspired by those people who, inspite of having Apert Syndrome, are able to confidently deal with life and with other people. I’ve asked them about it and they said that they were brought up no differently from their siblings - no special treatment, no concessions, just like everyone else.
Come to think of it, we all have our differences. Some may be more apparent than the others (like those with unusually shaped heads, hands and eyes), but they are human just like us. We are all different but each in a different special way. However to most of us, if something does not conform to the image that we have in our minds or to what we normally see, we immediately consider them to be abnormal.
We know that all of God’s creations are made perfect since we are all made in his image and likeness. Genesis 1:27"So God created man in his own image, in the image of God created he him; male and female created he them”Therefore it is safe for us to conclude that all of us are created perfectly in His eyes. Different, perhaps, but perfect nonetheless.
Psalm 139:13-16For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.
Jeremiah 1:5 "Before I formed you in the womb, I knew you. Before you were born, I set you apart for my holy purpose. I appointed you to be a prophet to the nations."
Which leads me to why I’m so hung over the new Lady Gaga song, “Born this Way”. Call me conservative and old but I was never really that big a fan of Lady Gaga. I guess she was much too outrageous for me. But when I heared this Fil Canadian kid sing her song on You Tube, I decided to check out the lyrics and that’s when I fell in love.
Here’s the latest you tube video of Maria Aragon singing for Ellen Degeneres
And here are the Lyrics to the song:
It doesn't matter if you love him, or capital H-I-M Just put your paws up 'Cause you were born this way, baby
My mama told me when I was young We are all born superstars She rolled my hair and put my lipstick on In the glass of her boudoir
"There's nothin' wrong with lovin' who you are" She said, "'Cause He made you perfect, babe" "So hold your head up, girl and you you'll go far, Listen to me when I say"
I'm beautiful in my way, 'Cause God makes no mistakes I'm on the right track, baby I was born this way
Don't hide yourself in regret, Just love yourself and you're set I'm on the right track, baby I was born this way (Born this way)
Ooo, there ain't no other way Baby, I was born this way Baby, I was born this way (Born this way) Ooo, there ain't other way Baby, I was born this way I'm on the right track, baby I was born this way
Don't be a drag, just be a queen Don't be a drag, just be a queen Don't be a drag, just be a queen Don't be!
Give yourself prudence and love your friends Subway kid, rejoice the truth In the religion of the insecure I must be myself, respect my youth
A different lover is not a sin Believe capital H-I-M (hey, hey, hey) I love my life, I love this record and Mi amore vole fe yah
I'm beautiful in my way, 'Cause God makes no mistakes I'm on the right track, baby I was born this way
Don't hide yourself in regret, Just love yourself and you're set I'm on the right track, baby I was born this way
Ooo, there ain't no other way
Baby, I was born this way Baby, I was born this way (Born this way ) Ooo, there ain't other way Baby, I was born way I'm on the right track, baby I was born this way
Don't be drag, just be a queen Whether you're broke or evergreen You're black, white, beige, chola descent You're lebanese, you're orient Whether life's disabilities Left you outcast, bullied or teased Rejoice and love yourself today 'Cause baby, you were born this way
No matter gay, straight or bi lesbian, transgendered life I'm on the right track, baby I was born to survive No matter black, white or beige chola or orient made I'm on the right track, baby I was born to be brave
I'm beautiful in my way 'Cause God makes no mistakes I'm on the right track, baby I was born this way
Don't hide yourself in regret, Just love yourself and you're set I'm on the right track, baby I was born this way, yeah!
Ooo, there ain't no other way Baby, I was born this way Baby, I was born this way (Born this way ) Ooo, there ain't other way Baby, I was born this way I'm on the right track, baby I was born this way
I was born this way, hey! I was born this way, hey! I'm on the right track, baby I was born this way, hey!
I was born this way, hey! I was born this way, hey! I'm on the right track, baby I was born this way, hey!
With all that being said, I hope that my little girl grows up with the knowledge that no matter what other people say, she is still perfect and that nothing and no one can take that away from her. And during those times when she feels discouraged and sad for not being a part of what society considers normal, I pray that she find strength in Christ.
II Corinthians 12:9-10 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong.
Philippians 4:11 Not that I speak in respect of want: for I have learned, in whatsoever state I am, therewith to be content.
