I know I have not been writing for too long (due to muscle weakness and lack of brain juice) but there is something that I wanna share with all of you.
Quite recently, I made an FB page for Fateha at The Super Preemie Named Fateha and there I share mostly of her condition and what she is up to. The posts are written in Fateha’s POV, which I wrote of course, with the help of Fateha giving me her ideas (or not).
So do come over for a visit to say hi, like, or comment on the photos or status. If you have kids with CP or are preemies, do drop by and give us a hi.
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Gaah, the school holidays are coming to an end! Why does it always seem to be taking too long for the holidays to arrive and then it passes by so quickly?? It’s not a day or two but it’s a month long holiday! But we managed to squeeze in a four-day road trip to (where else) KL!!! This time, it was a little bit different because we went with 2 extra heads. I mean persons.
(we left the camera at home (duh) and used our handphones instead, hence the poor quality)
And just like our last trip to KL 2 years ago, the hotel’s swimming pool was our first go go go! I didn’t jump in and swim with them. I was just dipping my legs and seated at the pool’s edge, watching them having fun.
the firstborn had long left her aquaphobia and swam to her heart’s content; she didn’t even wanna leave. the same goes to the littler one who was just as excited as her big sister. i couldn’t help but to laugh each time she tried to “drink” the water but of course we got her to stop and put her back in her boat float.
The next morning, we crossed over to the opposite of our hotel – Berjaya Times Square. Yea we’d been here countless of times before but this time, we weren’t here to shop. We decided to bring the kids to the indoor theme park, which Berjaya Times Square was famous for. We got good rates (don’t ask how) and took most of the kiddy rides together. It was meant for families with small children. I thought I wanted to ride on the roller coaster but when I thought about who’s gonna look after the kids if I was up there, I dropped the idea.
This little kiddo. She chickened out! She was afraid of all the rides. She clung to me, gripped my top, shawl and back of neck, buried her face in my chest and refused to get down. No, she wouldn’t even walk. Loud noises scared her crazy! She would shut her eyes so tight that if I were to pry them open, I would, literally, need a crowbar. Hahah!
But it was a totally different scenario with her big sister. Remember how Fateha was afraid of loud noises and dark caves that some rides would glide into and all that kind of things? That person had gone with the wind!!! Fateha was so much braver this time. I was shocked. And terrified. Worried. And definitely, I feared of the falls that she would have. My mind was corrupting me into thinking that she would get trampled on by those rowdy, impatient kids while on the rides. But she did good, no chickened out!
Oh i tell ya, there were kids like that at the theme park. It was a scary sight for me. And when Fateha wanted to ride on the viking ship (kids’ size), I got even worried but I allowed her, though. Asking me a couple of times if she could to ride it. Seeing her so confident and eager to sit in that ship, I didn’t have the heart to say no. Because the ship was kiddie size, adults were not allowed on it. Dang! I was even more anxious.
I got our helper to manage her onto the seat; the operator was also guiding Fateha in (she wore a “special needs” label) and I waited at the side. The other kids, boy, were they rough. It was a relief that no one accidentally pushed Fateha off the steps or else, the beast in me would have to appear and devour those kids. But they were so impatient when coming down from the viking. Luckily, the operator was there and glared at them. Although that was nothing, but it was something…at least.
The next day, we decided to go to I-City in Shah Alam via a taxi.
This Red Carpet housed what Madame Tussauds famous for – wax figures, but the resemblance of the celebrity wax figures were far from Madame Tussauds’. Prince William should have lesser hair and Marilyn Monroe, oh my goodness, far more pretty. The other figures were okay but I could not agree more with my husband that it was the best in Malaysia.
We visited the Haunted House, too. We were all tugging on each other, grabbing everyone’s shirt, with our eye closed. Hubby was leading us through the house hahah. Screaming, jolting and worrying about which figure would jump on us next!
They had Snow Walk (something like Singapore’s Snow City but I haven’t been there)!!! Jackets were free but boots must be rented, if needed and Hubby thought we didn’t need them.
Jackets sizes were crazy. Fateha was wearing an adult sized while Fateena was wearing a size that could fit Fateha better. But they were free, who cares! Once inside, I regretted for not renting a pair of boots. The kids wore covered shoes, it was alright. Hubby and I were on slippers!!! Who in the right mind would wear slippers to walk on ice?
Not only our feet were exposed to the cold, our toes got so chilled that I thought I might be getting frost bites and losing all of them. Everywhere was covered with blocks of ice as well as ice shavings and we almost tripped on our own slippery footwear a number of times! No, I couldn’t take the freezing temperature and found my way outta there, leaving Hubby and Fateha inside.
I-City was alright. I thought it could be better, they should have more wheelchair-friendly entrance or exits, lifts or escalators would be fine too. There were too many staircases and just imagine, if anyone who is wheelchair bound, how are they gonna go down the steps? And the one thing that I thought they should have in placed is a taxi stand, which they lack of. REALLY!!!
I kid you not. We came by a taxi and our driver was asking how were we going back to the hotel? By a taxi, of course, but our driver told us that it would be difficult to get a taxi from I-City. So I expected it to be because of a long queue at the taxi stand or what. But no, it was because there were no taxi stands there. Not even one. We were looking high and low for it under the burning sun. We were sweaty and angry!
And you know, since I-City was built on top of a hill, we had to walk all the way down and out of the area. We walked out onto the busy streets to get a taxi and then we finally got one. Phew! The only thing that we were complaining to each other was that the taxi was very stuffy. The air-con was not working!!! We got more sweaty and the kids passed out (as in slept throughout the journey back to the hotel). No, the driver didn’t even wind down the windows. I wouldn’t mind if he did that cos I missed the feeling of getting my face “beaten” by the rough winds.
Anyway, if anyone planning on going to I-City, do drive there. No taxis or cabs. Just drive!
I have been on a silent mode for quite a while now. Blame it on the pressure of my studies; completing crazy heavy-duty assignments and other unworldly things I had to do. And for that, I apologise. But now….
I AM FREE!!! well not really 100% free but at least a truck load of burden has been lifted so I feel so much better now, with a little more time in hand. hahah.
So what has been happening in our preemie boat?
1) Recently, we were featured in a local tv programme, Di Hujung Pelangi (End of the Rainbow). No, we weren’t acting (although I wished it was) but we were creating awareness in everyone about the condition that Fateha had. When the co-producer and script writer came to our home to a chit-chat session, I mentioned all diagnosis: Global Developmental Delay, Speech Delay, Erb’s Palsy and Cerebral Palsy (CP). But what attracted them more was CP and we talked about it, our ups and downs, and how it got that way.
So when the day to film us came, the programme crew set up their stuff at our home. we went through several things that we could talk about and the host shared a bit with me about her own daughter who was born with amniotic band syndrome. we also visited a success CP story of a local actress’ son, who was 26 and a CP patient. it was very inspiring, to learn about them and the determination they had. hopefully, our future will be as bright as we want it to be. anyway, the whole filming took about half a day; they came at 11am and we ended in the evening.
here is a snippet of the episode that featured us. sorry that the programme is in Malay language. but there is English subtitles.
you can check out the full episode here, Di Hujung Pelangi Epi 7. It was a tearful experience, of course.
2) The littler girl, who is 17 months old now, has grown 3 little teeth!!! Yes I am very happy for I have been waiting to see them since long ago. But the only thing I hate about it is that when she nurses, it hurts a lot. Yea! I thought that I wanted to stop nursing her once she had teeth but it seems that she doesn’t wanna stop. oh well… as long as I do not bleed, I will still give.
gahhh! speaking of the devil, she is calling me now and tugging on my t-shirt. you know what that means. gotta scoot!
3 years ago, when Fateha had her tendon transfer on her Erb’s shoulder, we thought that it would be the last surgery she would have to go through. and me, overnight-ing in the hospital with her. lo and behold, we had to do it again this year but this time, it was to lengthen her contracted biceps.
last thursday, all jittery, i accompanied Fateha into the surgery preparatory room.
that was where she had to change into her operation garment and anesthetic lotion was plastered onto her back hand; you know, just in case she needed an IV line. we were attended by a young Malay male nurse, who was very kind and friendly towards Fateha. he asked her questions so lovingly, like an elder brother to his youngest sister. it made me more relaxed and kind of looking forward to this procedure. once the paperwork were all done, a nurse from the operating theater (OT) came to us with a wheel chair and wheeled Fateha to the OT at the Main Building.
aaahhh, old memories began to seep in as soon as we stepped into the waiting room in the OT.
this time, hubby had to come in to the waiting room too. the anesthetist had to discuss with both of us the risk that we would be facing, should we decided to continue with the surgery. you see, Fateha was having a bad cough, with a little phlegm. so we were warned that she might develop inflammation in her throat and the cough would worsen. we decided to go ahead with it.
and then, we played the waiting game. it was horrible, to sit in the waiting room for more than an hour with a super hungry child. she kept asking for bread, rice, water… she couldn’t understand why she was needed to fast before the surgery, no matter how much i tried explaining. i didn’t blame her.
then a doctor came to us, with a camera in his hands, ready to shoot Fateha’s to-be-operated arm. i tell you, whatever the doc said or asked her to do, she gave him absolutely no answer. all she did was to turn to me and asked for water and rice. i had to turn her down again. and when the doc heard Fateha whining and begging me for food, he promised her chocolate after the surgery was over.
and then she cooperated for a while. after 3 to 4 snaps, we were good to go. for the surgery!
this surgery, similar to the first one, was 2 hours long. thank goodness for the constant technology advancement, in the visitor’s lounge where we were all waiting, there was a screen with the patient’s code and which room the patient was in; operation room or recovery room. our eyes kept looking at the screen, just to check out the progress of the surgery.
after 2 hours, we saw Fateha’s code had changed to recovery room. i was anxious! told our helper to get all the bags ready and within a few minutes, my phone rang. it was the OT, calling me to come over.
right there, in the same recovery room as it had been for the first one, Fateha was still sleeping with oxygen on. i almost burst into tears but i kept my cool. so i called hubby to come in to look at her, while i wait outside. yea, only one next-of-kin allowed. in about less than 5 minutes, hubby came out and called me to come in because Fateha was waking up. the nurse was removing the gas mask from her face and turned off her probes that tracked her vital organs. when she opened her eyes and saw me, the first thing she asked was, “Ibu, i want rice…” and dozed off. my poor, hungry baby!
i was asked to observe her and see if she was doing okay before we wheeled her into the general ward; the same ward and room that we had gotten before. her surgeons came in the evening and explained what they had done to her biceps and nerves, of which was not my area of expertise and i didn’t quite understand. all those medical terminology. Prof Aymeric seemed happy with the operation and kept saying how well behaved Fateha was. awwww, who were her parents again?? :p
Prof also showed me a photo of the surgery, which of course was printed just for us.
i was eager to see this, so that i would understand exactly how it had been done. so now i could tell which ones were her nerves. it was like reading How My Body Works book, with the exposed flesh and bones. i was seeing my own flesh and blood’s flesh and blood!
good thing was, she didn’t have to have a long stay in the hospital. i only brought 1 extra top for myself and if she were to have a few days more, i would have to get someone to get me some clothes. and, the foldable bed that the hospital had for parents who were staying to accompany their kids, was uncomfortable. but hey, it was better than my previous experience, where i had to share Fateha’s bed.
oh i forgot to mention. Fateha got her promised box of chocolate from the doctor who was a part of the surgery team. he was a nice man; came to see Fateha the next morning at almost 6am, just to give her the gift and to tell us that we could go home. luckily, i was already awake, showered and freshened up. Fateha was awake too and the doctor was shocked to see both of us chatting when he came. while other parents and kids, in the room, were still so sound asleep, complete with rhythmic snores.
doc: oh you’re up so early!
me: yea, we are morning people :)) (really, i no lie)
doc: aahh that’s good. anyway, here is your chocolate. you are such a good girl.
doc: anyway, she is alright, so she can be discharged today. Prof Aymeric will see you guys again later.
me: okay, thanks doc!
it was such a good start to my early morning because everything had fallen into its place for me. hubby decided to take child care leave so that he could bring us back home. my parents took half day leave so that they would be around when we came back (we went back to my parents’ because it was very near to the hospital). everything just went well for us after that.
tomorrow, we will be going back to the hospital for a review. let’s see how the wound is recovering.
I love beaches! We had some connections; between me and the beach. No matter how much I try to go against it, I will always end up in the water. And since I was a toddler, my family had always been planning for a beach picnic. And not just a mat and a basket kind of picnic. We’d bring a tent kind of picnic. And even charcoals and tongs and ice box and whathaveyous.
Last weekend, we did just that.
My paternal family is a beachy kind. We love beaches and after one beach picnic, plans for another one will come up as we are done with the current one.
Our favourite haunt is the Changi Beach. It beats me why we always come back here. Maybe because it is right outside of the World’s Number One Airport. Our uncles, aunties, cousins and even kids will go crazy when an airplane zooms by right above our heads with the thunderous roar of the engine. Though it can be VERY deafening, it is fun.
Other beaches like Pasir Ris Beach, East Coast Beach or even Sembawang Beach are in the “No Go” list.
And talking about food, my aunt (dad’s eldest sibling) will have everyone plan and discuss what kind of food they can bring. We whatsapp each other for the list of food – chips, sausages, dendeng, chicken wings with cajun seasoning, corn beef, bread, potatoes, bottled drinks, and even nasi lemak!
And we will never miss this one out. We love dipping ourselves in the water. When we get hungry, we walk back to our tent to get some bites of this and that. Minutes later, we’re back in the water.
And one of my favourite past time (recently discovered) is…
collecting sea shells. I have never done this before. I mean, yea, I used to pick them up, examine it but I would throw them back in the sea. This time, I brought them home. Lots of them.
Remember our last picnic here, celebrating Fateha’s 4th birthday? We encountered those ooey gooey jellyfish? This time, something else came to us.
A little sea star. Unlike the jellyfish where we caught more than 5 of ‘em, this was the only sea star we ever saw. I though that this is so raw. I mean, the only time I’d get to see a starfish would be at The Touch Pool at Sentosa. But this is a real encounter, swimming with us!!!
My brother accidentally stepped on it while he was in the water and he thought he stepped on a stone or something. Only when he tried dipping his hand into the water and picked it up, he realised it was a sea star.
We kept in it a cup with sea water of course. No we didn’t bring it home. Like good, compassionate citizens and animal lovers we are, we let it go – back into the water.
And whaddaya know. There is already a plan for the next picnic. I think you can call us orang laut, sea people.
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(damn the lazy bones and nerves in me!)
it has been 13 days since she added another year to her age. i feel proud and grateful for her. putting her setbacks aside, my little preemie has proved me wrong (and other times, right) that there are things that she can do on her own as well as determined to do them by herself.
her walking without support is improving well, although it is progressing rather slowly. but hey, i am not complaining. instead, i am glad. i finally get to feel how normal parents are feeling – walking behind their children, without the need to hold their hands and getting them to lead the way. Fateha refuses to let me hold her hand and walk together with her. she doesn’t want me to hang on to her. masya Allah, i remembered waiting for this day to come, 4 years ago, and thought that it never would. now it seems like i wasn’t waiting for it that long. alhamdulillah!
all i ever have to do now is just to watch out for her, in case she falls. oh yes, she is prone to falls. and i just cannot do anything to her tip-toeing and i am out of my wits, trying to get her to put her feet down. we have tried positive reinforcements; giving her praises when she was working hard to walk with her feet flat on the ground. talking it out with her worked for a while and then it went back to square one. but i cannot blame her, can i?
i am the kind of person who will fall back to the diagnosis and accepting the fact that it is like that. so i tell myself why she walks that way every time i fail at getting her to do it properly. and i am still trying to explain to others why she walks on her tippy toes. it gets very tiring when people just do not want to understand her condition and our situation. very tiring!
in 2 months time, she will be getting her Botox treatment to reduce the tension and hypertonia in her calve muscles. her treatment is scheduled for only her bad leg, that is her left calve. but hubby is thinking of asking the doctor to do it for both. i know, some would say, “ohh poor thing, can’t you just let her be and not doing it? it is so painful.”
i know that some are concern and pity Fateha that she has to go through all these. firstly, she is not like any other normal kids. she requires a lot of help and support from family as well as community. secondly, it is because we want the best for her and we are thinking about her future, which is why we are willing to go through these tough times. we just want her to be as normal as she can be. she does not need to be perfect like other kids because she is perfect in her own ways.
i am praying and hoping for the best. nothing beats than to see my preemie being independent.
if i were to talk about the adventures i had in 2013, i would need a year to do that. so i am only going to touch on the last bits that i did the previous year (that sounded as though it was long ago, ain’t it?). anyway…
we had three rounds of celebrating the little girl’s first birthday and another round will be this Sunday. ain’t she lucky? we did the same with her big sister 6 years ago (till now) because it was just so hard to do it once and for all when you have a big family.
the second time was together with my aunt, whose birthday was 2 days after Fateena’s. one of my cousins would have joined in as well, if he was around, because his birthday was 2 days after my aunt’s. our December “babies” have nice dates; they’re all even and 2 days apart from each other. Fateena – 20 Dec, Aunt – 22 Dec and Cousin – 24 Dec. we should plan for a birthday get together next December!
we had good food, of course! all home-cooked and prepared by another aunt, the eldest among my dad’s siblings. there were spicy fried noodles of 2 kinds, jeneket (Jenny Cake), KFC’s popcorn chicken (not home-cooked, of course) and of course, the birthday cake from Secret Recipe sponsored by the birthday lady.
and the third one was with my in-laws.
we had lunch together at a halal Thai restaurant – Jai Siam, at Dhoby Ghaut Xchange. the lunch was on my in-laws but the cake was on us. and because Fateha’s birthday was nearing, we added her name onto the cake. the cake that we had forgotten to take a photo of. it was a small chocolate cake of Tom & Jerry. because it was the only cake with the characters that suited these girls. Fateha being Tom and Fateena, Jerry. it was just them, except that they were females.
one last bit of 2013 that i absolutely love the most is definitely got to be this.
on the eve of new year’s eve, a small parcel was delivered to our home; late at night after i sent Fateha to bed. i asked hubby what that was and he said it was his. he ordered something from Qoo10. i gotta say that both of us are addicted to online shopping at Qoo10. we have been purchasing stuff one after another, be it for the home, the girls, birthday gifts for others and even for ourselves. i gotta stop this addiction – NOT!
the parcel was on the table so hubby asked me to get it for him. and then he told me to open it. wha-? why would he ask me to rip off the plastic wrapper? unless it was for me. and indeed, he said it WAS for me!! awww, it was a sweet surprise from him, who just kept a straight face. without even a smile or that loving, romantic look after seeing that i melted from his sweet gesture. that, everyone, is my husband.
after ripping off the wrapper, this was what i saw.
it was the awesomest gift he gotten for me. like, finally!!! something that i could feel good about when using. not that i didn’t like all the gifts i got from him. but this one, went on top of the charts like instantly. the smell, as the name suggested, was indeed seductive. i fell in love with this almost immediately. aaaahhhh, thank you husband!
but, hey, it wasn’t my birthday. and no, it wasn’t a Christmas thingy cos we didn’t celebrate. nonchalantly he said he got it for me just because. no reason behind it. but he did joke a little and said he had too much money! hahaha. yes, that, i already knew.
the following day, he sent me to work cos we planned to have breakfast together. while we were getting ready that morning, i thought of spraying just a bit of that beautiful and seductive eau de toilette. i asked him if i smelled good and he only said, “hmm.” as in agreeing with me “hmm”, not that “mmm” of inhaling the sensational smell. my husband.
i need to get him to a crash course of how to express himself. or maybe i should do it myself. after learning the theory, he could definitely and absolutely apply the practical with me, which would be very beneficial for us.
it has been a joyful, tearful, jerk-full, stupid fool and bloody fool 2013. would i ask for more? no, no more of 2013 cos we are already in 2014. new year has begun and i hope to get that good news that i have been hoping for. my new year’s resolution?
just to be myself.
HAPPY 2014, people!