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.