before she turned one, Fateha seemed like any other babies. so normal, so perfect. bubbly and chubby. only thing that i observed was that she had some delays in her gross motors, which i thought was pretty normal for an extremely premature baby. little did i know that things were not going the way i hoped it would.
i recalled the first diagnosis that fateha was given, other than having intraventricular hemorrhage when she was in NICU (no, that was a trauma to the brain that caused it to bleed), i was told that she had a birth injury called erb’s palsy. this diagnosis stayed with us till today. apart from that, her delayed walking was not discussed much; it was just brushed off as global developmental delay (her speech was part of this).
i was curious to find out what was her primary diagnosis and her main condition that hindered her from developing like normal kids. i went into my own research; watching videos, tv programmes and readings about children with global developmental delay (gdd). but i was disappointed. none of them matched what i was told about Fateha.
looking at her gait, how she bent her knees while walking, and how she uphold her posture while walking; they all matched to kids with cerebral palsy. something that i did not want to accept. no, my child could not be having this disability. and when we brought her for a neuro appointment in july, we heard the word “cerebral palsy” being mentioned by one of the neuro team while they were working on her. my heart cracked. this, no one knew (until now that i am writing this).
today, another scheduled neuro appointment, i learnt two new diagnosis. from the same neuro team. how could this not be detected earlier when there was not any difference with Fateha’s condition? sigh. when the associate professor was assessing Fateha’s arm, instructing and discussing with his team of doctors, he mentioned to them that this was not erb’s palsy, like what was written in Fateha’s medical file since 2008.
then they mentioned that a classic erb’s palsy patient would have what they called a waiter’s tip hand, like the above picture. and Fateha did not have any of it. just that her biceps, deltoid and triceps were all tight and caused her arm to bend. they said it was because of muscles contracture. but i believed that was indeed erb’s palsy. just that it got worse that her muscles got contracted. sigh.
and to improve the condition, another surgery was planned for Fateha. this time it would be to stretch and lengthen her contracted biceps so that she could bend her elbow downwards and upwards like normal people would. for that we would have to do an intensive therapy, something that we had done before when she had a tendon transfer procedure when she just turned three. it did not have much progress and improvement.
when her calves and ankles were assessed, the professor also planned for another botox treatment. this time, it was meant for softening her muscles around the ankle. all for making her walk properly without tiptoeing. and when i was passed the appointment card, along with a form for the treatment, i saw what was written in the primary diagnosis. spastic diplegia.
i swear i had a puncture in my heart. what was that? i thought it was cerebral palsy, like what they mentioned previously in july? and now a spastic diplegia?? i requested for a letter from the team of her condition. and i mentioned that they needed to be specific and accurate. i told them that i needed it so that it would be easier for me when in case i had to produce something when enrolling Fateha in a mainstream kindergarten. luckily, they obliged and wrote me a diagnosis right away.
when i got home, i googled spastic diplegia and sighed a relief. it was just another word and a form of cerebral palsy, where a highly tightness and stiffness found in the lower part of the body; legs, hips and pelvis. i need to learn medical terms, like, right away. so that i would not faint or get a heart attack when i hear a different diagnosis.
in the mean time, i need to bury myself under my duvet. see you guys in my next post when i come out for air.
We brought Fateha to the rehab clinic today for an appointment with the Neuro team. Prof James Hui and Prof Stacey Tay were the heads today.
They touched her Erb’s arm, her calves and ankles, and concluded that she was having a nerve problem. Nothing to do with her brain. Alhamdulillah. She had to walk in front us and the team, of about 11 people, with newly brought in crutches from Germany.
We were recommended to get them instead of the quad sticks because the latter would not help her to be in the right posture.
I have never seen her so brave and determined to use the aides. Good job, little girl!
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I decided to send her downstairs to her school bus today. She still has a lil bit of that separation anxiety whenever I send her. Or even her dad.
So while waiting for the bus to come, I tried talking to her about things that she likes. You know, Thomas, Barney and the likes. We giggle and laugh about the cars that pass by or say hi to the friendly neighbours we know. She is all cheery and happy until she hears the bus’ thundering engine roaring from across the road.
Her eyes will be swelling with tears, although she does not cry out loud. She says her goodbye to me in her shaky voice with a weak wave. I carry her up the bus (it’s a tourist coach type) and the attendant brings her to her seat. And she vanishes from my view.
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well it is all about my very first entry/visit to Universal Studios Singapore (USS) at Resorts World Sentosa. it was yesterday! i have never been this excited to write an entry before. not even with the birth of my girls. sorry! if it wasn’t for my uncles’ and aunt’s offer, i wouldn’t have the chance to step a foot inside. reason being the expensive price we have to pay for a ticket. but i thought it was all worth it! the price, the rides and the time you spend there. *six thumbs up* (mine and the girls’)
yes, we brought Fateena along, though she spent most of the time either in the stroller or in my arms. she would have enjoyed it, i know, because i did! i was probably the only one here who had not been to USS. minus the kids. even my husband had gone there. sad, ain’t it? i take my hat off my uncle rahman. he enters USS like he enters the loo. every single day (so he said), he just went in and took the Transformers ride and off to work. if i had that annual pass, i would have done the same.
and so, with an army of 20 people (16 adults, 1 kid and 3 babies) we entered the world of fantasy. (since we went in during the weekdays, there wasn’t any crowd. waiting time for most rides was 5 to 15 minutes, the most.)
right at the entrance, we were greeted by woody woodpecker and his female (sorry, i don’t know her name).
the vintage cars…
they were not officially opened but we were lucky that there was a soft opening. we seized the opportunity, seeing that there wasn’t any line of people queuing. the ride inside was the cutest; with elmo as the captain of the space chase, flashing at the small screen of your seats. it was dark, of course, since we were in “space”. i couldn’t help but to keep thinking and worrying about Fateha. she wasn’t in the seat with me. i was sitting with my cousin, while she sat with her dad. she had this fear of loud sounds (similar to kids with autism) and would just have an outburst anywhere, anytime (and it’s the same reason why we DO NOT bring her to the movies). i was praying that with hubby around, she would be okay.
since i finished the ride first, i waited for them outside, still worrying. i couldn’t help it. any special needs mom would understand. when i saw her walking out from the ride, with hubby, the first thing i did was to ask if she was okay. and she was 60-40. 60 being scared and 40 enjoyed the ride, nonetheless. because there was ELMO! *phew*
and right outside, was a little dancing and singing performance by everyone’s favourite characters. personally, grover was my first choice. he sho cute! we stayed there watching them move for like 5 minutes and i thought of waiting for them to finish so i could grab a photo with them. but my uncle rahman pulled us all to…
the 3D Transformers ride. the ride that he took every day before scooting off to work. my heart went boop boop boop boop boop so fast that it could jump out of my chest. yes, i was such a scaredy cat. and that was not enough, my cousin khair had to scare me with all these “you’ll be splashed with water”, “it’s scary” blah blah blah. and my uncle said, “don’t worry. it’s a fun ride. and very relaxing.”
i took the challenge and went ahead. i ended up taking the ride twice. hahah! it wasn’t scary at all. it was fun, yes, fast and furious. not relaxing like what my uncle said. too many rides made him like that, i guess. immuned and fearless. the second time, we coaxed our faint-hearted aunt to take the ride. bad, aren’t we? lol. she did and she survived. with screams and tears, of course.
another cousin, sabby, couldn’t wait to take Battlestar Galactica. yea, that super crazy roller coaster.
being a real coward, i made a pass. it wasn’t for me. hubby did it the last time he went and he allowed me to try if i wanted to. of course, i didn’t. but sabby, oh dear me, she was just like uncle rahman. fearless! probably because she already tried the one in LA, which was the mother of this galactica. the only thing i could afford to do, in all bravery, was just to look at it from below. it was more than enough. just by looking at the type of seats they had, that famous roller coaster scene from the movie final destination was flashed in my screwed up mind. REALLY!
they had Human and Cyclone; one is seated and the other is suspended. even if i died and came back to life, there was no way i would do it. no.
but i was mystified by the mysterious ancient egypt. if pharaohs were still alive, with mastabas and sacred shrines still standing, i would visit them.
*transmission*… i remembered playing The Pharaohs on the computer years ago. building a kingdom as a queen of ancient egypt. built temples and shrines of Ra, Bast, Ptah, Anubis and Horus. housing the people of the kingdom, schools, paper factories and orchards by the Nile River. thanks to my brother for introducing that game.
weeks before the trip, cousin noretta had been persuading me to take the Mummy ride with her. reaching this side of USS made her even more anxious to drag me along to meet my fate. and rode in it i did. was it fun? yes! scary as hell, too. especially at the drop-off parts. i think there were two. the snapshot of us screaming was hilarious. we ran out to the sitting area where the rest gathered, to take some cash so we could buy the photograph. but uncle rahman shoved us back inside so that we would ride for the second time, with him and other cousins. i was still scared.
a Madagascan boat ride. tears trickled down Fateha’s cheeks when the boat was riding the harmless current of water and into the darkness. the moving characters really did scare her but i was happy to have my aunts and cousins who kept praising and encouraging her, ensuring her it was all fun. she put up a brave front towards the end and cried, “Wow…so happy!”
bought the two sisters loots from the Sesame Streets.
hubby brought Fateha into the shop and she chose Elmo bottle and school bag. whereas for the littler one, i parked her stroller outside and went in myself. she wouldn’t need the things there now. most were for bigger kids and older kids like me. but the Grover soft toy was uber cute!!! since he was my favourite, i got Fateena one. not fair, ain’t it?
and what a way to end our trip with…
Marilyn Monroe. it was uncle rahman’s wish to take a picture with her but we were the ones who were approached by the star herself. yea! i guess it was because she saw us carrying babies and she came straight up to us. i was especially exultant when she called Fateha a princess.
yes, she is my princess and will always be. throughout the whole trip, i was pleased with Fateha. she didn’t get very frightful and no sudden outburst from her. people may think it’s normal for kids to cry when they hear loud sounds etc. but not for her. her cries and screams can last for as long as you can imagine and her body will stiffen. during the Water World show, where there were pyrotechnics and explosions and stuff, Fateha hugged hubby’s arm. she got jolted numerous times when guns were shooting or mortar-like weapons went off. her eyes swelled with tears but no bursting! thank goodness.
to get her to pose in front of the raptor was a bad idea. she did scream, hahah, no tears but struggled like crazy. ok the motorised velociraptor was indeed scary but what about the chimp of Madagascar? harmless, right? not for Fateha. i had to coax her a couple of times.
i think she did a great job. mommy’s so proud of you.
on our recent trip to johor bahru, for our fortnightly market-ing, the highly-obsessed-with-everything-thomas-the-tank-engine little girl saw a puzzle set of the said cartoon. daddy let her choose and she happily picked one of Thomas with Sir Topham Hat, or famously known as The Fat Controller.
it wasn’t her first puzzle set. i made laminated puzzles for her as well as bought some of those educational ones. most of them were way too simple and yea…she got bored. we let her try puzzles we installed in the iPad, which she loved a lot. completed most of them by herself. but i seriously think it was not the puzzles that made her excited and enthusiastic. it was the fact that she was using the iPad.
and being someone who is very much against young children spending too much time and getting addicted with the gadgets of these era, i try ways and means to discourage her. so today upon reaching home, i reminded her of the Thomas puzzle that daddy bought for her (before she started asking for the i-goddamn-Pad).
much to my approval and contentment, she began to fix the pieces together diligently. oh was i so glad to see that. anything a child of multiple disabilities (erb’s palsy, global developmental delay, hypertonia) able to achieve is worthy of a celebration. i was a little cruel though by asking her to try again (and again and again) after her completion. but she didn’t deny my request!
i truly enjoyed watching her manipulating each puzzle piece, and each time she matched the correct ones, she yelled “YAAAY!!!” without fail.
however, my joy was short-lived. she asked for the i-goddamn-Pad.