Ish, Ani & Air

Last week has been one hell of a roller coaster ride for us.

The first half of the week was fun-filled. We went to Lombok for a family (plus girlfriends) vacation. Afif had so much fun swimming in the pool, discovering waterfall, playing with the sand and being chased by the waves at the beach. Everything was smooth-sailing. 

 Playing with sand and attempting to build sandcastle

Us at Sendang Gile Waterfall, Lombok

Until we board the flight home to KL.

He had a major diarrhea. We had to change his diaper twice on the plane and once at the airport. Later that night, the diarrhea didn't subside. He developed a high fever. The next morning, he's still sick. We brought him to the hospital and he was warded for 3 days. He was tested positive of rotavirus. (T_T)

It was challenging for me; being pregnant, having morning sickness and looking after a sick, whiny child who needs to go to the bathroom 10 times a day. i couldn't imagine how painful and tired he feels. My poor baby..

Tapi setiap kejadian, ada hikmahnya. Hari kedua kat hospital, Afif tengah tengok Barney and Friends kat iPad. Tetiba dia kata dengan excitednya "Aaniii!!". Pastu everytime bebudak dalam Barney tu jerit "Barney!", Afif pon akan kata "Aani!!"

Kat hospital jugak, dia belajar sebut "Fish". i showed him videos with fist in it, drew fishes for him.. Lama-lama, nampak je ikan, dia akan sebut "ish!"

As he needed to drink a lot to keep him hydrated during his diarrhea episode, i always made Ribena for him. Sambil buat air Ribena tu, mama akan cakap "Afif nak air? Mama buat air.. Air sedap.. Ok, nah air.. Minom air.." Lama-lama, dia reti sebut air. Bila nak mintak, dia akan tunjuk sippy cup and i'd say "Air. nak air?" dan dia akan cakap "Air.."

Kali ni, sakit ada hikmah untuk Afif. He learnt to pronounce not only one, but 3 meaningful words. The pronouncation might not be perfect but he'll get there. 

Mama and daddy are so proud of you, baby! We've got a feeling that you'll be blurting words after words from now on.

;)

House Visit by Dr. Basha

Last Saturday we had the pleasure of having Dr. Basha visiting us at home. Dr. Basha is Afif's speech therapist from TUTUR, Klinik Audiology UKM.

Objective of the visit is to see how Afif is at home. Where he always hangs out at? What he does at home? What are the toys he plays with? How do we, as parents, interact and communicate with him? Things like that. After making the observation she would sit us down and discuss what she sees and comments on what to improve.

She came at around 11.30am. Afif malu-malu pulak salam dia. After having a drink, we straight away went to Afif's playroom. Upon entering the playroom, Dr. Basha said "Wahh dah macam therapy room!" Hehe.

Afif pon buat la apa dia selalu buat. Main conteng-conteng buku. Dia suka bila Mama pegang tangan dia and lukis beruang sambil nyanyi lagu "Anak Beruang". Upon seeing this, Dr. Basha suggest pausing at some parts of the sound to encourage him to continue singing or asking me to continue singing.

Lepas tu main masak-masak. Main bola. Conteng dinding. Ada jugak time yang dia takmo main dah. Sibuk nak turun. So we took 5 minutes off and doktor suggests what to do with some toys.

After we're done playing, ajak Dr. Basha makan. Senang hati tengok dia selera betol makan. Lauk kampung je pon. Of course la bukan aku masak dah aku sibuk main ngan Afif. Baahaha.

She said my skill of interacting with Afif is good and she has no comment on that. Cuma kene banyak ulang-ulang supaya lekat dalam kepala Afif. Idzwan has to improve and needs to talk more to Afif. The key with interacting with a deaf child is to make everything fun. Bila fun, diorang automatic akan nak main dan nak belajar.

Dia jugak suruh kitorang gunakan laman rumah yang luas tu. Bercucuk tanam atau menebas, ajak Afif. Siram bunga ajak Afif. Aku gelak je sebab kitorang memang lah bukan gardener hoih. Tapi akan cuba lepas ni.

Aku suka betul ngan Dr. Basha ni. She is the kind of doctor whose involvement with her patients is not limited to working hours. Email aku tak pernah tak balas. Weekend ada je dia buat playgroup for certain group of children. Weekend jugak dia buat house visit kepada sesiapa yang dia rasa memerlukan. Doctors like her really make a difference. Whether she knows it or not.

Thanks doctor, for your time and patience. 

Audiograms: August 2014

Last two weeks we went for unaided audiogram at Klinik Audiologi UKM. Ntah kenapa hari tu Afif takut dengan puppet berlampu tu (kene respon pandang ke puppet bila dia dengar bunyi. Itu untuk menunjukkan yang dia dengar). Dia menangis dan berpeluk je masa mula-mula start test. We ended up not using the puppet, just let him draw (more like menconteng) to distract him and observe his change of facial expression/movement bila bagi dengar sound.

What's worrying is that his hearing loss seems to be progressive at the high frequency. Meaning his hearing is worse that the last time we had an unaided test.

Afif unaided test Aug 14, 2014.

i argued with Pn. Izzati about the accuracy of the test because Afif listens well and while his speech progress is not much, it does not seem to worsen. He can even pronounce shh/ (which is a high frequency sound). Pn. Izzati kata dia ulang banyak kali bunyi kat high frequency tu tapi Afif still tak respon. Lagi la mama risau :'(

We discussed about possibility of cochlea implant for Afif. Beacuse if his hearing loss is really progressive, i want to insist on him having a CI. i don't want to risk waiting and delaying him to learn to speak. Pn. Izzati suggested to run one more aided test. With both aided and unaided test, she can bring forward Afif's name in the next CI meeting.

So last week we went for another aided audiogram.

Alhamdulillah, this time he was not scared of the puppet anymore. And the more good news is, Afif's aided hearing threshold has improved from last aided test in June.

Afif aided test Aug 19, 2014.

Though relieved at this result, i'm still in doubt. Because after 8 months of consistently wearing hearing aids, and looking at the good aided hearing threshold, Afif's meaningful words are limited to Mama, meow and hai. Nothing more. 

Yes, he had produced more sounds like shh/, na/ di/ ge/ but no other meaningful words. Maybe there are certain speech sounds that he can't hear or maybe it's our teaching technique that is wrong.

At the last discussion with ENT, audiologist and speech therapist, they all agreed that Afif is progressing okay. But as a mom, i'm still worried. i'm still not satisfied.

As of today, we have decided to seek second opinion from experts from other hospitals. We feel that after hearing opinions from others, we'll be more comfortable in making decision; to continue with HA or to go for CI. At the same time, we're learning more and more to be a better speech therapist for him.

Being parents of deaf child really is exhausting. It's not the dealing with your deaf child that is exhausting; it's the pressure of making the right choice for him that is exhausting. We want the best for him but we don't know what the best is.

O' Allah. Ease our journey to make the right choice. Ease Afif's path so that he can hear and speak beautifully. Please give him the ability to hear and speak and the opportunity to learn, be accepted and have a bright future like other normal children. Amin.

Speech Learning Tools from Cochlear.com

i've been meaning to share this but kept on forgetting.

On last speech and audio discussion, Dr. Basya and Pn. Izzati suggested i view and print this printable module from Cochlear website. It has week by week activities to be carried out with your hearing impaired child. It's like a guide for doing your own speech therapy session at home.

i, of course did not know this exist and never thought of going to Cochlear website because Afif is not a CI boy. But Dr. Basya said it's okay because it's the speech lesson that matters, regardless of the baby using hearingaids or CI.

There's so many steps to get to this page so i'll just give you the link:

http://hope.cochlearamericas.com/listening-tools

Depending on your baby's hearing age, you can choose the module for babies or for toddler. Though Afif is a toddler, his hearing age is 8 months so i chose to work with Sound Foundation for Babies module. 

There are week by week module. As Afif has been wearing HA for more than 8 months, i did not start on module 1 for him. Choosing which week to start on was a bit tricky for me as week 36 module looks too advanced for him. In the end, i went through almost all of the module and decided to print week 15 onwards. Even with that, there's a few things in those module that Afif has not mastered and a few other things that he has mastered. So evaluate your child's speech and hearing and start the module according to that.

i wish i knew about this modules when he started wearing the HA. It'd be way easier for us. Anyhow, what's done is done. We'll have to work hard.

Sound Foundation for Babies: for the first 12 months of aided hearing

Sound Foundation for Toddlers: for the first second year of aided hearing

For convenience, i have saved the link under the "Informative Links on Hearing Loss in Children" tab on the right side of this blog.

 

Afif's printed module.

i put it in clear pocket by week.

A Sense of Belonging

As a hearing mother of a deaf child, i have always felt lost. I've always felt like i'm stuck, having no one to talk to, no one to ask, not knowing anyone who has been in the same shoes as i am. Any questions i have had always been directed to Afif's speech therapist, audiologists and Mr. Google. They have been so helpful but there's always this void, you know? i wanna know i'm not alone in this.

So i went on like that.

Until one fine Saturday morning, i attended a playgroup organized by Klinik Audiologi UKM. Though without my husband (who had to work), i learnt so much and finally met other parents and their deaf kids. We talked, had sharing session, and listened to a beneficial presentation by Dr. Basha while the kids are well taken care of by the facilitators.

Sadly, we rushed home as Afif has gotten cranky. i didn't get to swap numbers with any of the moms. Memang sedih la tak sempat tukar-tukar nombo phone dengan ibu-ibu yang lain.

Lucky for me, i bumped into Su while going for Afif's MRI follow up at HUKM. Su is Naurah's mother (a 2year-old hearing impaired girl) who i met during the playgroup. We talked for a while, swapped numbers and the next thing i know, i'm invited into this Telegram chat group.

*Telegram: application on the smartphone for chatting. (macam Whatsapp jugak)

Ya Allah. Bersyukur sangat di-invite dalam group ni. 

There are around 50 mothers (and the numbers are expanding) of hard of hearing children. Ada yang senior, contohnya Kak Ziba yang anaknya pakai HA, speaks well and masuk sekolah rendah biasa. Ada jugak mak-mak newbie macam aku and Su yang anak kecil lagi.. Ada yang pakai HA, CI and bone.. Ada yang dari KL, Kuantan, Kelantan, Sepang.. Setiap hari ade je topik diborak; children's development, cara terapi kat rumah, buku mana yang best, menu harian, etc.. When any of us has any questions, the others will try their best to answer. Even if sometimes i don't get a definite answer, i'm still so happy to know their experience.

Finally i don't feel like the only mother of a deaf child anymore. 

If any of you readers are a mother of a deaf child, contact me and in sha Allah, you'll be invited into this chat group too. You're not alone in this.

:)

Audio & Speech Assessment

Hari Selasa lepas gi combined audio and speech therapy session kat Klinik Audiologi UKM. Patutnya speech therapy hari Isnin, tapi aku mintak buat hari Selasa pagi sebab ada meeting penting Isnin tu (dilema ibu bekerja). So Dr. Basyar kata takpe la combine je masa audio session masa petang.

Ingatkan diorang nak buat audio test pastu buat speech therapy. Rupanya diorang just nak borak-borak and discuss je..

Firstly diorang kata based on Afif's progress so far, Alhamdulillah he's doing good. Even though last audiogram ada certain frequency tak masuk dalam banana curve, Afif shows good hearing behavior. A few times Afif tengah leka main, aku suruh dia lompat and dia memang lompat (without having any visual hint). Bijak anak mama!

In terms of speech, walaupon belom ada a clear meaningful word, he demonstrates a wide range of sound. Aku update diorang Afif dah boleh sebut gege/, shh/, meow/ (bila nampak kucing), de/ to name a few (on top of what he can say during our last appointment in June). i also showed a few videos of Afif meowing, main masak-masak, dance to 'The Wheels on the Bus', and buang pampers bila mama suruh.. They're happy to see his progress siap kata "Bulan lepas takda lagi semua ni.."

Alhamdulillah his progress is a bit more advance compared to his hearing age yang baru 7 bulan. Good job, baby!

Dr. Basyar jugak ada tanya pasal Afif's behavior. Last month, memang Afif cranky dan asyik marah je.  Tak cooperate langsung masa therapy. Mungkin sebab Daddy dia takde (outstation sebulan). Alhamdulillah, bila Daddy dah ada ni dah takde cranky or marah-marah dah. Happy je dia. Dr. Basyar kata memang bila mak atau bapak takde for an extended period of time, a toddler would be depressed. They can't express or tell you that they miss Daddy so memang buat perangai la.

i also asked a few questions about possibility of cochlear implant. Sebabnye aku dengar drp ibu-ibu anak istimewa mcm Afif, memang pakai HA insyaAllah boleh bertutur dengan baik (provided parents are giving intensive therapy at home) tapi akan ada masalah di sekolah nanti. So Pn. Izzati (Afif's audiologist) explain, takpe sekarang progress dia okay. Kalau buat CI, diorang risau kalau akan rosakkan hair cells high frequency Afif yang elok. So we'll see in 6 months. Kalau aided audiogram tak elok and still takde first word, baru buat CI.

Diorang jugak ada tanya, bila Mr. Chenta nak amek cuti panjang untuk jaga Afif kat rumah. Because now is a critical time for him to learn language. InsyaAllah lepas Raya. Haritu nak cuti dah tapi kene posting overseas pulak. So pasni harap-harap lepas la cuti dia.

Dr. Basyar said i'm doing a good job. You don't know how much that means to me. i always feel like i'm not doing enough because i have to work instead of being at home to help Afif. That kind words from Dr. Basyar really lifts my spirit.

Anyway, we have to continue guiding him and doing speech therapy at home. i hope Afif will be able to hear and speak well. InsyaAllah.

MRI & CT Scan

Last 2 weeks Afif did MRI and CT scan. Purpose of this scan is to investigate Afif's ear structure and function, in case he needs cochlea implant.

We did the scan at UKM Specialist Center under Prof. Goh. i thought doing MRI and CT scan is simple; walk in to the hospital, sedate Afif and get him to sleep, do the scan and leave. Boy, was i wrong.

Because Afif is such an active little boy, Prof Goh said sedating him wouldn't be enough as he would probably wake up halfway through the procedure which is a complete NO as we need to be perfectly still during these scans. So Afif had to be under general anesthetic. In other word, complete knocked out under anesthetic. So we checked in at the hospital the day before the scan.

What's more challenging is that my husband is away and it was the first day of Ramadhan. Imagine dealing with an excited-to-be-in-a-new-place toddler alone and fasting at the same time. He didn't want to stay in our room. He walks all over the ward, demanding for elevator rides (we went up and down the lift a dozen times).. i can't even buy food for break fast. Thank God for the kind nurse who bought food for me.

 Kepenatan lepas nangis sebab tangan kene cucuk

 i'm bored, Mama..

Strike a pose

Afif's scan is scheduled at 9am next morning. He had to fast for 6 hours prior to that. That. Is. The. Hardest. Part. He is still breastfed and still wakes up 3-4 times a night. That morning, he's awoke at 5am (thanks to the nurse who insisted on taking his blood pressure.. Last-last tak valid pon bacaan) and refused to go back to sleep without being breastfed. He cried and cried. i tried distracting him but distraction didn't last long. He's too thirsty that he even tried to drink from mineral water bottle. Watching your child cries in hunger is the worst.

Before going to the Radiology Department. 

Dia macam tau-tau je orang nak buat something kat dia. 

Crying coz he wants milk.

The Procedure

After hours of denying my poor boy any food and drink, it's 9am. The procedure started at 9.30am. They put him to sleep ( a bit heartbreaking as he was crying and refusing to lay on the MRI bed. i had to hold him still while the medical people drugged him and watched as he slowly drift into sleep). All sorts of wires are attached to his body. Nak MRI je pon tapi macam kene major surgery je rupanya..

 Looking like Casper the Friendly Ghost

i managed to take this pic of him in the CT scan room

i was not allowed to be in the MRI and CT scan room so i waited outside. Thankfully, my sister in law came at around 11am. At around 11.30am, everything's done. We waited a few minutes for him to wake up. The doctor and medical team waited for him to wake up to make sure that he's okay. Then, we went back to our room and later that afternoon, discharged and went home.

Anxiously waiting for him.

The Results

After 2 weeks, we went to see Prof. Goh to know the findings of the scans. Using the scan images, she explains a bit about Afif's ears. Thankfully, both of Afif's cochlea (which is the main objective here) looks good and in normal shape. It means if he needs cochlea implant, it can be done without any complications. i asked about the cochlea hair cells that are not developed (which caused deafness) but that can't be seen from MRI. To see that you need micro-something and usually done for study purposes.

Prof Goh looks happy with the scan results. For now, Afif does not need implant as his progress using hearing aids are good. If in 6 months he does not show any improvement, only then we'll look into cochlea implant. 

Audiogram: April-June '14

Last April, we (meaning the audiologists, Afif and i) managed to finally complete the audio tests covering almost all the frequencies in the audiogram. i must say it is not easy with a curious and active toddler. He hates wearing the headphone. In the end, they plug the machine in Afif's earmold instead as it it more comfortable for him.We went for 3 sessions to complete it. His unaided audiogram:

Afif's unaided audiogram.

Red line = right ear

Blue line = left ear

From this audiogram,  he has moderate to severe hearing loss on right ear and severe to profound deafness on the left ear.

From this audiogram, it's clear that he can't hear speech sounds (located in the white lines, or as we call it banana area). 

After obtaining the complete audiogram, the audiologists had done some re-setting to Afif's HAs. They add some gain in the low frequency sounds and minimize the gain in the high frequency sounds according to the newly acquired audiogram. Then, audio test with the newly set HAs was conducted. We could only obtain the right ear audiogram due to Afif's impatience (-____-)

Afif's aided audiogram (April 2014)

The results are not that good. The audiologist assured us that it's because Afif has not yet adapted to the new setting. In one or two months he will respond better to the sound.

True enough, we notice that Afif hears better after that. He now picks up low freq sounds (like daddy's and uncle's voices) better than before. Yippieee!

In late June, we went for another aided audio test to see his progress after the newly-set HAs. Alhamdulillah, as expected, there are improvements.

Afif's aided audiogram, June 2014.

Although the audiogram shows some improvement, the audiologist and speech therapist are concerned over his bad response in the lower frequency. Yes, they fall in the banana area but he's still missing sounds like 'u', 'ng', etc. At the last appointment, i can see that they're more suggestive of cochlear implant.

We're giving it a few more weeks, to see if he adapts better. Another audio test will take place next week.

In the meantime, the ENT specialist suggested Afif to get MRI and CT scan, which were conducted last week. We'll know the result next week. Hopefully we'll know if he's a candidate for cochlear implant or not.

Hearing Tests for Babies

i'm gonna explain a bit about the audio tests that Afif had taken from birth until now. Please note that this post is from my understanding, my experience and my point of view. i'm no doctor nor audiologist so i could be wrong.

1)Automated Otoacoustic Emission (AOAE)

Also known as newborn hearing test, it was conducted on Afif when he was about 3 days old. He failed it but the audiologist assured us it could mean nothing as c-sect babies tend to fail this test as fluid tend to retain in the baby's ears and nose. Afif took the test again at 1month old and still failed the test. 

How is it done?

"They place a small soft tipped earpiece in the outer part of your baby's ear which sends clicking sounds down the ear. When an ear receives sound, the inner part, known as the cochlea, usually produces an echo. The screening equipment can pick up a response." -source

2) Tympanometry

After failing his first AOAE, the audiologist conducted tympanometry on Afif. 

"Tympanometry is an examination used to test the condition of themiddle ear^[1] and mobility of the eardrum (tympanic membrane) and the conduction bones by creating variations of air pressure in the ear canal." -source 

In short, the audiologist wanted to check if Afif's unfavorable AOAE result is caused by fluid in his middle ear (which means a temporary hearing loss) or not. Afif's tympanometry suggests normal middle ear function - no fluid and the eardrums are functioning okay.

How is it done:

By inserting a thin, long probe into the ears. It took around 5 minutes. 

3)Auditory Brainstem Response (ABR) and Auditory Steady State Response (ASSR)

When it is certain that he doesn't have middle ear problem, ABR and ASSR were conducted. Afif took these tests at the age of 2 month. 

For Afif, these tests confirm that he has bilateral hearing loss (HL) especially in the higher frequency. Moderate to severe reverse slope HL in the left ear and severe to profound reverse slope HL in the right ear.

How is it done?

It is done by placing a soft headphone on baby's ears, and 3 electrodes on his forehead and sides of the head. The headphone produces sound (picked up by the ears, send to the brain) and the electrodes will pick up how the brain processes the sound. A graph (called audiogram) will then chart his brain response at a particular frequency and volume. For details on the similarity and difference between ABR and ASSR, click here

To conduct these tests, the baby has to be very still, quiet or better yet, asleep. It was a challenge with Afif as he is quite a talker (he started to coo A LOT at 2 months.. which is why i found it hard to believe that he's deaf). For the first ABR and ASSR (he was 2 month old) we did the test while i was breastfeeding him as that was the most comfortable position for him. At 7 months, we looked for second opinion at a different hospital. He had to be sedated for the test to be conducted.

ABR test when Afif was 2 months young. 

So tiny in my arms.

Afif's various test report on at 2 month young.

4) Audio Test Using Audiometer

Once his hearing loss has been determined, Afif went for countless sessions of audio tests. Without hearing aids, to test his actual hearing threshold and also with hearing aids to see how effective the hearing aids are.

How is it done?

Purpose of this test is to see his hearing behavior - can he hear and respond to it?

The audiologists uses audiometer to produce sounds at different volume (decibel) and frequency (Hz). This time, the tests are conducted while he's wide awake and alert. Unlike ABR which charts brain response, Afif's physical reaction to those sounds are recorded. Did he turn to the source of sound or did he not hear the sound? His reaction is then charted into the audiogram. 

For me, these sessions are the most exhausting. To make it work, the child has to sit still and be distracted with toys/books but at the same time not too distracted that he ignore the sounds. Afif was a 14 months old toddler who is so eager to explore everything. Who won't sit still. Who has a short attention span to toys/books. Not to mention the times he's cranky/unwell. It took us around 5 sessions to complete the tests, covering all frequencies and decibels for both ears. Phew.

*  *  *  *  *  *

Writing this post took me down the memory lane.
How with every tests, confirming that our son is deaf, are like stabs in our hearts.
How speechless we were when the audiologists and doctors explain that he can't hear well.
How my heart cried, not knowing more, not knowing what to do.
How in every audio tests i silently shouted in my head at Afif "You can hear that. Turn your head to the speaker." hoping that against all odds, he is actually hearing.

i'm sure he'll have to go through more tests. we'll take it one step at a time.

First Music Class - A Disaster

i have been reading Rhianna's Cochlear Implant journey and i'm amazed at Yanti's (her mom) effort to get Rhianna to hear better. After Rhianna was diagnosed with her hearing loss, she got he cochlear implant. Yanti took a long time off work to intensively care for Rhianna. She signed her up for music and reading class, and actively went for playgroups/seminars.

i decided to enroll Afif into a music class for toddler too.

We initially went for a trial class. Us being us, we got there half an hour late. Afif being Afif, he was so amazed at a new place and busy exploring. Instead of joining in with the teacher and other kids dancing and singing, he went to bang on the wall, tried to open drawers, and busy pushing buttons at power outlet.

Totally not what i expected.

The teacher assured us that it's common for newcomers to be like that. Busy exploring and not joining in. i felt a bit better. So we signed up for the class.

Last  Saturday we went for the first class. Got there half an hour early, at the teacher's advice. Afif, as usual, busy running in the mall, went up and down the escalators (my brother and i took turn to watch him). 

At 3pm, the class started and Afif has gotten a little cranky. i guess he was tired from all the running and climbing. Again, he refused to cooperate and join the crowd. He followed instruction when he feels like it but most of the time he'd just do his own stuff. 

The teacher gave a pair of bells. He just played with it for a while and then threw it on the floor. When i picked it up, he'd cry and want it back and then proceeded to throw it on the floor. The same with plastic mirror. More throwing and crying. A couple of times, he laid on the floor and bang his head on the floor. That's the first time he did that!

It was chaotic. Music playing, 5 toddlers with parents dancing around and there i was, desperately trying to calm my child and getting him to join the fun. 

i was so depressed. What happened to my fun loving boy? My singing and dancing boy? The other parents looked at us like we're aliens. i could feel them judging me- a bad parent.

At the end of the class, the teacher told me to sign Afif up for a sign language class. She said that he can't tell me what he wants, that's why he's so angry. i felt so humiliated, especially as she done that in front of other parents. 

YES, my child is deaf. i want him to hear and speak that's why i sent him to a music class. If i want him to sign, i would've taught him sign language without you telling me to. Besides, i know he wanted milk but would you like it if i breasfeed right then and there in the class with fathers watching? Instead of saying that to her face, i kept quiet and left.

Sigh.

If it's up to me, i would never want to go back. But we paid for a semester of music class and the money would've gone to waste. We'll see how it goes next week.

Ee-Aii-Ee-Aii-Ohh

Afif will be 19 month tomorrow.

His hearing age is around 9 months.

As usual he babbles a lot. Lately he always say eyaiyaiyaii. At first i did not know what he's saying. One day, we were watching some nursery rhyme videos on YouTube and Old Macdonald song came up. He sang along and say eyaiieyaiiyaiii..

He was singing ee-aii-ee-aii-ohh all along!

Obviously without the ohh part.

Nevertheless i am so happy. That's a progress!

He also sings along a few other songs. He sings in tune which is great but no clear words yet.

He loves singing Twinkle Little Star, Itsy Bitsy Spider, Wheels on The Bus, Old Macdonald, and Head, Shoulders, knees and Toes to name a few. How do i know he's singing these? Because he made different movements with different songs. Spinning wheels, starry fingers, spidey fingers and touching his knees and toes. 

Can't wait to hear the next words that will come out from his mouth ;)

 9 hours road trip to Kota Bharu, Kelantan.

Distracted him with drawing blocks, toys and the iPad.

Took off his hearing aids as the car seat causes feedback and whistling.

Playing with his lil Aunty Delisha

Pregnancy and Labor

Just like any other couple, Idzwan and i are two people in love. 5 years in relationship and we decided to get married.

Two months into marriage, we found out that i'm pregnant. As new parents, the usual mix of emotions were there. Happy, confused, ecstatic, anxious, excited.. All at the same time. i went through rounds of morning day and night sickness. Nothing i can't handle.

Viral Fever

At 8 weeks of pregnancy, i got a high fever with rashes all over my body and was hospitalized for 4 days. Turned out it was viral fever. The entire time, all i can think of was my baby. Please let my baby be okay. Please let my baby live. Please let my baby survive. Please, no harm on my baby. Ultrasound shows that my baby is very much alive and kicking. The obstretician assured me that the baby is okay. Not to worry. It was a relief.

Thankfully the rest of 7 months of pregnancy went smoothly. Monthly ultrasound scan and bloodworks show that my baby is thriving and healthy.

Labor Story

Week 36 of pregnancy, i was bleeding. Was taken to the labor room and it is found that i'm having irregular contraction. i truly thought i was going to deliver my baby boy on that day. i was given two steroid shots to mature the baby's lungs as the baby is not full term. After 3 days of hospitalization and being observed, i was sent home. Baby is not ready to come out yet.

At 37 weeks, my water broke at 3am. At 10am, i am still 2cm dialated and baby's heart beat began to decrease. Doctor decided we can not wait any longer and i had an emergency c-section. It turned out that the umbilical cord was short, making the baby unable to descend.

Afif Haiqal was born on 11 October 2012. Truly one of the happiest moments in our life.

Now, the reason i share Afif's birth story is to see if there's a connection between my pragnancy/labor with his hearing loss. 

The doctors suspect that the  viral fever that i had at 2 months pregnancy is the culprit. At 2 months, baby's organs are developing. An infection at that time could interrupt the process. If that's the case, we're thankful it's only his ears that are not properly developed. It could've been something more serious like his brain or heart.

Or it could've been during birth itself. As i mentioned, the umbilical cord was so short that it almost broke. The lack of oxygen supply could've been another reason to his deafness. 

Anyway these are just my theories.

Introduction

Assalammua'laikum and Hello!

This blog is dedicated to our firstborn son, Afif Haiqal.

Afif was born on a bright Wednesday morning (on 11th October 2012 to be exact) via Ceasarean section after a dramatic false alarm. He entered this world screaming and ready to pounce.

On his third day on Earth, he failed his newborn hearing test. We were told not to worry as it is normal for C-sect babies to fail his/her newborn hearing test as the amniotic fluid tend to still be in his/her ears and nose long after birth. The ears will be ok after a few months, they said. So we did not think much about it.

At around one month old, he failed the test again.

And again.

And again..

We came back for a few more test. ABR, sedated ABR, tympanometry..

All tests and check-ups bore the same result; our son has moderate to severe hearing loss.

As parents with normal hearing with no family history of anyone being born deaf, we were taken aback.
Puzzled.
Confused.
Sad.
Mad.

Why is this happening to our perfect baby?

Why our baby?

We were in denial.

He babbles and coo a lot. He talked back when we talk to him. He CAN NOT be deaf.

We went months trying to prove the test results wrong.

We went to seek second opinion at another hospital.

Still the same result. Afif has moderate-severe hearing loss.

And we can't prove the test results wrong either.

He would not respond to me calling him from behind. He would not flinch at the sound of thunder.

Though hard, we finally accepted that our son is hearing impaired.

Not deaf, just hard of hearing.

At 9 months, he got his hearing aids.

And thankfully (Alhamdulillah) he began to show hearing behavior.

That's why this blog exist.

This blog is dedicated to Afif Haiqal. So that one day he'll be able to re-live the journey, know the effort, the path we chose, the things that we do for him, with him.

So that he knows, he is perfect in his imperfection.

i also hope this blog will be a companion for parents of deaf or hard of hearing children. All the wikis and medical websites can give you information, but i find that reading other parents' experience more of a help. i hope this blog is good enough to be a reference for you.

Please know that you're not alone.

Our children will be okay.

New Friend

The past week has been a bit of emotional whirlwind for me.

Having blessed with a hearing impaired child, i'm never at ease. Most days are fine. Some days i'm in despair, panic attack, guilt.. i worry a lot. i have so many questions.

When will Afif talk?
What if Afif can't talk?
Will his future be okay?
Can he make friends?
Can he go to normal school?

More questions than i (or even his therapist) could answer.

The hardest thing is not having or knowing anyone else that have the same experience.

i missed Afif's last speech therapy because i had to present in a meeting. i never missed it and God did i feel guilty. Mr. Chenta took him for therapy and he is amazing but you know it's different when you are not there.

Because i'm such a control freak, i emailed his therapist. i can't rest not getting information first hand. Asking this and that. i hope she doesn't find me too bossy and nosey. My prayer has been answered when she gave me a contact number of a mom with a hearing impaired daughter.

It's just what i need.

Someone who was there, went through what i go through.
Someone who can share what she did. How she did it.
Someone who understands.

We got in touch recently. Alhamdulillah for this new friend.

She said it ain't easy.
She took time off work in the critical years.
She went for seminars/talks/classes. She sent the daughter (who was 2-4 years at that time) to music class, writing class, and various therapies.
She put of having another baby until the daughter is 6 years old.
But now, she said, it's worth it. The daughter is 7 years old and speaking and hearing well.

i'm so amazed at her effort.
i never thought of music class nor writing class for Afif (for God's sake, he's not even 2!)
i never went for talks/seminars/playgroup. Not because i don't want to, because i couldn't find one.
Though i wanted to go someplace else for therapy, i never made the move.

This new info is both a relief and a curse.
Because i feel like i'm not doing enough for my son.

Oh well.
What the use of dwelling.
Now that i know, i'll do a better job.

Must. Find. Music. Class. ASAP.
Must. Find. A. Talk/Seminar. ASAP.

Toddler Activity: Bathroom Painting

Ok so Afif loves the iPad. i came to realize that after two mornings of him getting up and out of bed and point the iPad at me. Now before you bash me, don't worry. It's not an addiction yet. Setakat ni tak pernah la lagi dia mengamuk tantrum kalo tak dapat. Phew phew..

But yaa.. Of course we have to plan stuff for him to vary his activities. Mainan banyak tapi kejap-kejap main dia bosan. Dia suka main air, aku layan la jugak kat toilet tapi susah sebab takot basah hearing aid dia. Main hide and seek pon layan. Dia layan gak crayon, pencil color and magic color tapi lelama dia ada idea conteng dinding plak (-____-) so i minimize his contact with those.

i got him this Crayola Washable Kids' Paint a few weeks ago. The first time we painted was one rainy day after he got up from his afternoon nap. Kononnya fun activity. Tapi time tu dia cranky, dia conteng sekali dua je pastu marah aku cat tapak tangan dia pastu we wrap up. So much for being artsy.

The supplies for painting activities.

 End product

Cranky kene paksa melukis

Then yesterday i had this bright idea of combining his favorite place, the toilet, and some art stuff. Maka terjadi lah bathroom painting!

Bangon pagi dan brekpes, i stripped him down. Ingatkan nak mandi la tuh. He got excited pon seeing the paint i laid on the stool in the bathroom. Then i started painting the house and tree, he followed suit. But of course, no house, tree or even stick figures from him yet. Conteng-conteng ikot suka je.

Muka puas hati main conteng-conteng

Our masterpiece.

He was so happy experimenting siap cover toilet bowl pon dia conteng. i think this activity is good to train our baby's motor skill and also to teach them colors. i even mix a few colors together to create a new color for example blue+yellow=green!

The best part is this Crayola Paint is totally washable. After our painting session, simbah air kat dinding tiles tu and gosok sikit-sikit pakai tangan je terus hilang color tu. No mess for lazy moms like me.

p/s: malam tu dia amek pencil color dan conteng dinding rumah while i was busy in the kitchen. Laki aku gelak je "siapa suruh ajar conteng toilet?" katanya. Haihhh..

18 Months

My baby is one year and a half already.

Hari Rabu haritu bawak dia gi 18 months doctor's appointment. Alhamdulillah berat dah 9.4kg (a bit on the low side), tinggi dah 78cm. Head circumference aku lupa brapa. Dr. Anthony kata semua ok and Afif ni friendly and social btol. Hehe. 

Pastu kene cucuk DPTa. Dia bagaikan dah tau nasib nak kene cucuk, takmo baring atas katil doktor. Cucuk smbil dukung je. Nasib baik nanges kejap. Pasni dokter kata takde kene cucuk dah smpai la masuk skolah nanti unless nak amek optional Hepatitis A jabs masa umur 2 tahun. 

Meh bebel pasal milestone:

Feeding

-dah kurang memilih. Apa aku bagi dia telan je. Yayyy!

-babysitter kasi makan 2 kali kat umah dia: pagi n petang. So malam aku akan kasi jugak makan

-kalo ada lauk baby-friendly kat umah like masak kicap or sup ayam/sayur/ikan, aku bg je lauk tu dgn nasik. Kalo tak, aku masakkan porridge/sup/pasta/mi goreng.

-his current favorite is fried carrot noodle with tomato n salmon. Laju dan licin. Wan pon suka. 

-since aku masuk kerja ni, aku still pam kat office. Tp ebm tak cukup jugak utk bekal kat umah babysitter. So campur ngan FM. At times dia mmg reject FM. Babysitter akan ganti ngan Ribena or susu kotak Dutch Lady coklat.

Development

-berjalan nak laju aje tapi clumsy. Kadang tu laju sangat smpai tak sempat brake/lose balance pastu jatuh. Aku stress btol kalo jatuh n kepala benjol. Tapi lantak la asalkan tak mudarat.

-loves to sing and dance. Paling dia nyanyi n joget is twinkle twinkle little star, wheels on the bus and theme song Timmy Time. Suka tengok dia joget kat Timmy Time theme song.

-dia ni makin friendly plak aku tengok. Kalo mood baik tu jalan kat mall semua orang di lambai nya siap kata "haiii.." Dia ingat dia Prince George ke ape. Pastu suka jugak salam random people magadddd! 

-thankfully, bila strangers mcm sales girl or waitress panggil or nak dukung, dia taknak, siap nanges. 

Activities and hobby

-dah kurang obsess ngan iPad, alhamdulillah

-dia suka build tower block, sepak-sepak bola, main air (pantang tengok pintu toilet bukak, laju je masuk. Aku takleh lalai kene make sure pintu toilet tutup at all time), menconteng (takleh kasi magic color dah sebab nampak dia nak conteng sofa and dinding aritu)..

-suka pusing and spinning sampai pening huyung-hayang

-current fave dia adalah main hide and seek ngan aku. Bukan nyorok betol pon. Nyorok blakang dinding/pintu/kerusi bajet orang tak nampak. Baahaha. Suka betol dia smpai malam pon gigih kami nyorok nyorok.

-his current fave shows are Timmy Time, Tayo the Bus, Mickey Mouse Club House and Tom & Jerry. Kalo ada cerita2 ni memang kusyuk la the first 5 minit depan tv. Pastu sibok la cari remote tukar channel.

Hearing & Speech

-Hmm.. sebenarnye tak banyak progress sangat. His frequently pronounced sounds are aaaaa, mammamamma, and he can say "hai!" and "bye" fairly clearly
-dia dah pandai ada tune lagu. Paling obvious bila ada barang jatuh and we say "ah-haa tak tau siapa buat?" he will say "aa-aa a-a-a aaaaa.." in that sing song voice. Also bila nyanyi lagu Minion yang Banana tu, dia pandai jerit at certain part yang minion tu jerit. Hihi..
- but sounds like tatata, bababa, eeee, etc belom ada..
-my suspect is that maybe the hearing aids don't amplify certain sounds in the best way. We're currently in the process of taking audio tests to get full results. Will post about this later.

That's my baby.

Beli kain kat Jakel pon nak sorok-sorok kejar-kejar

Kisses for you

Ni masa favorite uncle dia, Uncle Redha nikah. Masa nikah pon dia sibok nak berkepit ngan Uncle.

Suka memanjat walaupon tak berapa terror lagi

The only way to get him to sit down at a mall: gi toy store and test toys

Nak bebas je kalo kat malls.

Ilyas nak suap Afif air

After about a year of tak berjumpa, dapat jugak bebudak ni jumpa masa makan-makan kat rumah Kak Yulie.

From left: Adam anak As, Ilyas anak Chuna, Aisyah anak Shim and Afif anak aku.

Hide and seek. 

At 15 Month

Dah lama tak buat post Afif's milestone. Moh kite..

Feeding

-Kalo nasik or porridge memang susah betol nak makan. Macam-macam style aku buat dah. Tumis pakai butter or olive oil. Letak telur or letak cheese. Vege and protein pon aku tukar-tukar nak test mana dia nak; broccoli, carrot, pumpkin, spinach.. Chicken or salmon. Tak kisah la apa pon cara, still dia takmo. Aku conclude dia memang kureng suka nasik.

-Makan nasik lauk kurma suka pulak.

-Tapi kalo pasta amboih laju je makan. Selalunya licin mangkuk. Yang paling dia suka tomato-based sauce. Aku memang buat sendiri pasta sauce tu sebabnya yg ready made tu buat pakai cuka. Takot perot dia sensitip pulak. Pasta plak pakai alphabet pasta. Senang kecik-kecik takyah nak potong bagai.

-Dia suka makan fruits. Betik, tembikai, melon, limau mandarin.. Kalo brekfes tu kadang aku malas aku bagi je dia avocado-banana mash. Memang laju je habis.

-Snacks lain yang dia suka adalah Cheerios cereal and organic apple puff ape ntah brand tu aku beli kat Manjaku. Roti cicah air cekelat pon feveret.

-Ni sejak aku kat rumah memang memanjang dia bergayut nak breastfeed. Every hour. Tak dapat monitor brapa oz sebenarnya. So happy i can fully direct breastfeed him. Takyah risau susu dipam cukup ke tak hari-hari.

 Alphabet pasta with homemade chicken bolognese sauce. His current favorite.

Development

-At 15 month dia belom boleh jalan sendiri okeh. Pening gak aku sebabnya dah 3 bulan bertatih ni. Bila lepas tangan, dia jalan 4-5 steps pastu jatuhkan badan. Macam dia gayat je nak bediri/jalan lelama. Kadang kalo dia berdiri and rasa aku lepaskan tangan, cecepat dia duduk. Takpe, i know it'll be soon. I'll enjoy these days that you love holding my hands so much.
-Skill lain dah boleh salam and cium tangan orang. Wave hands and flying kiss. High five. Suap makanan sendiri guna sudu even though clumsy lagi. Dah tau konsep bukak/tutup lampu, fridge, penutup teko (he's obsessed with teapot). Geleng kepala bila takmo. Clap hands. Dance to songs.
-Tunjuk kat mata bila ditanya mana mata.. Ketap-ketap gigi bila ditanya mana gigi. Bila nampak patung Barney, dia tunjuk mata Barney pastu tunjuk mata dia. Matching skill is there.

Teman mama dedi lepak kat mapley.

 You're just like an angel. Your skin makes me cry.

Activities and Hobbies

-Hobi dia apa lagi kalo bukan iPad. Kalo nmpak iPad tu tu shriek sambil tangan joget-joget. Memang pantang la dgn aku. Sehari aku limitkan boleh 2 sessions je tu pon 10 minutes. Nasib baik kat iPad dia reti unlock, tengok videos and tolak-tolak page apps tu je. Tak ajar main game.
-Sekarang dia suka menyanyi. Ada satu lagu dalam Barney ni Chugga-chug dia suka betul. Everytime dia nyanyi (bukan ada tune pon. Aaa-aa-aaa camtu) sambil menari cam Barney, kitorang tau la dia tgh nyanyi lagu tu. Haha
-Suka jugak main passing-passing bola back and forth ngan aku or Hubby. Excited nak tangkap bola  everytime kitorang pass kat dia. Pastu baling bola tu bawah lemari suruh orang amek (-____-)
-Suka campak barang atas lantai. Yang ni aku penat btol nak layan tapi layan kan aje. Everytime dia campak, aku akan buat muka terkejut and cakap "Hahhhh! Susu/mangkok/kalkulator/bola jatuh! Siapa jatuhkan? Afif ke? Pegi amek.." Memang idok ler dia amek.
-Dah pandai main Mega Bloks. Idok ler sampai built gajah/spaceship bagai.. Dia dah tau konsep sambungkan blocks. Sambungkan, pastu cabut. Gitu je ler..
-Obsess dengan kucing. Seboleh boleh dikejarnya kucing.
-Haritu kat Langkawi bawak dia gi beach. Nak ajar main pasir kononnya. Tapi dia geli. Diangkat nya kaki pastu suh aku dukung. Sabar je la.

 Tiger and cat.

Upin Ipin's biggest fan. 

Kecewa sebab mama suruh main masak-masak ngan Barney. i wanna play ball ma!

(in my defense, the speech therapist suggest role play to enhance speech and language development)

 Mama's mall buddy.

Hearing & Speech

-Alhamdulillah sejak aku amek cuti ni, nampak banyak improvement. Paling penting dia suka pakai HA dia. Dulu suka cabut. Skarang memang bila dipakaikan, sampai aku tanggalkan baru cabut. Alhamdulillah.

-Kalo aku lupa pakaikan, dia tunjuk kat hearing aid tu. Pernah skali ni aku sengaja tak pakaikan sambil bg dia tengok Upin Ipin. Pastu dia raba telinga dia sambil pandang aku. i take as a sign that he's asking for it.

-Lagi banyak membebel dan menyanyi. Dulu kureng.

-Tapi bunyi yang dia keluarkan still limited to aaaa, maaa, mammm, abumm.. Still no na, ta, da.. It's okay. We'll get there. Tak sabar gi next speech therapy nak belajar how to teach him to produce sounds.