it was something that we had all been waiting for and 5 years to be exact. i didn’t believe that it she really did it because the waiting time was just too long that i was having thoughts of her not able to do it at all and would be needing an aid for life.
my heart teared with joy at seeing her sheer determination to walk independently. now that she “found” her legs, she couldn’t stop walking. she was too excited to be able to do something that a toddler could easily achieve.
so i guess, she will not be needing these crutches anymore. but we will still keep ‘em, for all the memories she had with them.
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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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.
I have to sweep off the cobwebs that are growing immensely in my brain to dig out a month’s worth of entry. Blame it on the 2 year Leadership course that I just got myself into recently, that takes 3 nights in a week off of me. I am literally, technically, physically, mentally shag.
Baby No. 1
We brought her to the hospital for an occupational therapy session last month and found new ways of getting her to utilise her right arm. She was cooperative initially; obligingly followed the instructions given by the therapist. However, that cooperativeness was short-lived and she began her Energizer bunny mode.
As we have mentioned before that her therapy also included a 10 minutes session of using the electrode, which she disliked to the core! We had to think of ways to get her to comply and just get it done. In the end, getting her to count 1 – 10 was the best solution. And for that, she got to play…
Baby No. 2
Just a week ago, we welcomed baby Nur Laaiqah into this
cruel beautiful world. Being the busiest woman in my family of soon-to-be 4 people, I didn’t have the time (and energy) to visit her at the hospital. So I waited till the weekend, after baby and mom were home. Fateha was also as excited as I was to meet her little second cousin.
Fateha showed great skills at being the eldest great grandchild of Latiff’s family, helping her aunt get the diapers and wet napkins and shutting the drawers and even cooing the baby. Boy, I tell you, I have no idea where and who she learned that from.
I guess I was the one who got her started talking to her unseen little sibling. Every night as I tucked her in and kissed her good night, she’d do the same to Lil Bub and kissed my bump. At times, she would also question her little bro (or sis).
her: hello baby! What are you doing, huh?
her: don’t kick ibu, okay? You want to sleep, baby?
her: i love you baby! (kiss tummy)
bub: *kick kick*
And speaking of my Lil Bub…
Baby No. 3
Last week was our monthly check up and the gynae did an ultrasound scan to check the heartbeat. Lil Bub was so active! I think it was because of the Olympics. Anyway, I was just about to ask if she could see who exactly Bub was, when the gynae said detailed scan would be scheduled at 22 weeks where i could find out the gender.
In 3 weeks, I shall know.