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.