Home sweet home!

We are home ! Rhianna's recovery is going pretty smoothly despite the lack of mastoid dressing.Apparently good enough for the surgeon to let us go home.We are still on the lookout for any swelling or hematoma but hopefully none will show up.Right now,there's only minimal swelling and the ear is sticking out a bit.It looks kinda funny but normal for any CI surgery.

This time around,her recovery is faster and easier.She didn't vomit at all after surgery.Her appetite was back almost immediately and no nose bleed like before.She is now back to her normal happy self and needs constant reminder not to run or jump too much.(I really don't want to go back to the hospital! )

This is about 5 hours after surgery.She was already playing and watching DVD.She was still wearing her OT gown.No dizziness or balance problem noted.

24 hours after surgery,she's already playing with a new friend.The other girl is waiting to do a spinal tumour removal surgery (my heart goes out to her and her family).Amazingly,both girls will turn four on the same day, May 13th! How cool is that?

At home after finishing a whole ice cream cone.She's pretty pampered at the moment but I dont' think it will last that long.She'll be back on regular diet very soon,trust me.And she's keeping the hospital tag on her wrist because it is PINK.

And again,keep us in your thoughts and prayers.

She's out!

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Surgery in 8 1/2 hours!

So,looks like we are going to make it to the surgery table (thank god!).It is now 12.30 am and the surgery is scheduled at 9 am.

Rhianna is fast asleep on the hospital bed and I'm feeling so nervous about the surgery.She was admitted this morning and they ran full blood test and multiple check ups to make sure that she's fit to go in tomorrow.So we will probably be here for a couple of days (standard procedure here) for observation after the surgery.

It's not easy taking care of an active child who is not sick yet stuck in a hospital.Luckily they have a big play room with many toys so she's not that bored.Unfortunately the room is closed at 5pm so mom had to take over and entertain her from there on.Fortunately,mom is smart enough to bring a couple of new toys and dvds (thanks Barney!).

Anyway,Rhianna's beloved Mama Gee will scrub in and observe the surgery tomorrow.I opted not to.I'm not squeamish with blood or anything,but seeing someone drills into my daughter's skull is a different story altogether.

Soon Rhianna will be bilateral and another hearing journey will begin. Keep us in your thoughts and prayers!

p/s: will update with photos tomorrow.What else can one do when stuck in a hospital but blog?

Twisted sense of humor

We finally received a surgery date for her second implant - April 28th !


Let's not discuss about how will she bond or learn to listen again with this new device.The thought of another switch on and multiple map sessions (as exciting as they are ) will make me hyperventilate.
Let's not even talk about the surgery process.I might need a tranquiliser to calm my nerves.

Today we'll talk about sense of humour.

I am a speech therapist who has not much experience working with hearing impaired children.Aside from my student and training years,I don't really take HI cases.It's not really my cup of tea.I'm more into autism and PDD and things like that.So what did God do? He blessed me with a deaf child.Now, I really had no choice but learn all the techniques needed to teach my child.

Getting the first CI was a bit too easy for us.The government funded the whole thing and we got it fast.We also got our favourite surgeon and audiologist even though they were very busy and very much sought after.So,where's the humour in that?

It took 3 adults to hold her down and stick that damned thing to the her head while she screamed bloody murder..and that thing tend to fall off every 5 minutes or so and the whole process would start all over again.It took her quite some time (like one whole month of screaming her throat sore) to bond with her first ear and now they are inseparable.


About a month ago in preparation of this pending surgery,I upped her prebiotics,give her daily doses of multivitamins,fish oil and extra vitamin C to build better immune system and possibly avoid cough and cold episodes.
Then,God decided to be funny again and sent us some virus just when I was about to pull her out from school and keep her at home.
So now she's sniffling and coughing and on various medication trying to meet the surgery date (we'll update you whether we make or not).

I've learned a lot of lessons on this journey with my daughter.I've learned a lesson in humility.We can always make plans but God will make the final call.I've learned to take things easy,enjoy the moment and worry less.I now understand that everything happens for a purpose..even the most impossible and difficult things.We just have to find the purpose God intended and fullfill it.

And I've also learned that He has such twisted sense of humour.

Funding for CI

As promised,here are the ways to find funding for CI in Malaysia.
The criteria for CI candidacy in Malaysia is probably the same as anywhere else in the world.The child has to be diagnosed to be between severe to profoundly hearing impaired.The audiologist will then put the child on hearing aid trial (between 3-6 months)to see whether any benefits can be obtained from the device.from the ongoing assessment (including mri and ct scan) they will determine whether CI is necessary or not.

In our country,some private hospitals do perform CI surgery for self pay candidates.But the pioneer for this technology in Malaysia would be the National University Hospital (HUKM) who also provides funding for eligible candidates.Our ministry of health has also recently established a CI team that moves around the country providing funding and surgeries for the candidates in general hospitals.So you have to get in touched with these hospitals to learn of ways to get funding.If you work for the government you can apply through the JPA though it might take some time to be approved.So there are many ways to get the first ear implanted.Bilateral implantation is not yet available here.

The problem is,chances are very slim that you will be funded for the second ear that will cost u RM58K currently (for nuchleus 5).So what most people did (we are trying too)is to try to get donations from generous companies.In return,these companies will get tax exemption for the amount donated.There are some who appeal through the media too.You'll be surprised to see how generous people are in our country...

finding new ear

We have been exploring the possibility of bilateral hearing for Rhianna.She has been implanted on the left ear in august 2009 and switched on in september 2009.So she has been listening for almost 7 months now.Her speech and language progress is amazing.She currently has expressive vocabulary of over 100 words and she is starting to combine them into phrases more easily.She can hear pretty much everything including people whispering (in a quiet envirotment).But telling the direction of the sound remains a challenge since she is only listening from one ear.

So we fitted her with a hearing aid on the right side.Unfortunately,she can only pick up very loud sounds from that.I mean VERY loud sounds like drills,train,chainsaw sounds.So,she needs another implant on her right ear to give her bilateral hearing..and project Finding New Ear begins...

p/s : for those looking for funding for cochlear implants in Malaysia,we'll discuss the options in the next posting.

Surgery day!

August 24th 2009..After months of preparation and home quarantine to make sure that she didnt get sick,the day finally arrived.Rhianna was admitted the day before surgery as it is the procedure here in our country.Blood was taken and tests were performed and early the next day she was off to the operation theater.They were going to operate her left ear and she would become unilateral CI user.(why not bilateral?At the moment,bilateral surgery is not available yet here and there's also a whole issue of funding to discuss).

Only god (and other mothers who ever had a child going through surgery) knows how I felt that entire 2 hours of waiting.I was praying and pacing the floor until I saw her being wheeled to the recovery bay.Then I knew that she was going to be fine.
For other parents who are waiting for CI surgery on their children,let me tell you this..It's an undeniably heartbreaking and gut wrenching experience.However,the surgery is actually safe and quite fast in the hands of good surgeons. Knowing that you are trying to provide your child with an opportunity to develop verbal language,a chance to be mainstreamed in school and also a shot at having normal childhood would make every agonizing moment worth it.

So, an hour after surgery,Rhianna woke up sleepy and grumpy but she didnt seem to be in pain.She pretty much rested the whole day but that night she got up and with her funny bandaged head started walking and exploring the hospital.I guess the whole day of resting had reenergised her and to be confined in bed??You've got to be kidding me.So our little toddler toddled around all night much to the amusement of the nurses.

The next day,little miss grump wiggled and struggled and took off her own bandage( that was bugging her).The doctors said that it was fine but later that day she develop hematoma.Probably the result of not keeping the bandage tightly long enough.So the poor surgeon came back and suffered little miss grump's screams and kicks and rebandaged her head ( my hat off to the surgeon for his patience).

So parents,keep the bandage tight and long enough for any swelling to reduce.Bandaging a child's head when she's awake,kicking and screaming is not an easy business.

Anyway,everything else went well and we went back the next day.


An hour after surgery


Early the next day