Fun girl down

So,my fun girl was down from one illness to another.Last couple of weeks she contracted a viral fever complete with coughing and vomiting.Not very pretty,yes.She recovered in a few days but was cranky for a while.

Last Saturday she contracted  stomach flu, a severe one too and it nearly got her admitted to a hospital.Luckily she didn't refuse fluid so we were able to keep her at home. I had to give her 75 ml of ORS fluid every hour.If there was any vomiting or diarrhoea, I was to add another 90-120ml.Believe me,that was A LOT of water and I had to give it in sips not gulps to avoid more vomiting.So we were stuck in bed taking sips of water for at least 8 hours while watching Strawberry Shortcake DVD over and over again.It gave us plenty of cuddle time which was nice.The not so nice part was when she refused her CIs (which is understandable considering how sick she was feeling).

However,her not hearing left me feeling so inadequate.She talks like she normally does when she has no CIs on and she read lips quite well but only within context.If you try to explain something new,it would be terribly hard and she would start to guess a lot and we both would end up frustrated.Then,I would start feeling sad,upset and nervous over how much language opportunity that would be lost during these silent hours.

Ok,I know I should take it easy but it takes a lot of struggle on my part to relax when I have all these mixed up feelings.It doesn't help that Miss R refuses her CIs every time she is sick.How do I explain to her that the injection will only sting a bit and it will help stop the vomiting or she has to sip the water and not gulp no matter how thirsty she feels to avoid vomiting or the sips of water will prevent her body from getting dehydrated and many other things like that if she can't hear me?
Maybe we should start our sign language course soon.

Anyway,the good news is she's almost back to her own happy self.

Miss R and her army of dolls

Two years of hearing (and nonstop talking )

So, Miss R celebrated her 2nd hearing birthday on September 15th.She was switched on at 2 years 4 month of age and has moved at lightning speed since.She learned to detect,discriminate,identify and imitate all Lings 6 sounds within 2 weeks of switch on and produced her first words at 3 weeks post switched on.She started combining words about 2 months post switch on and she achieved all these milestones with us struggling to keep the CI on her.She hated her CI initially.I really didn't understand it since she was learning so much and enjoying the sounds that she could now hear.I guess she must have enjoyed giving us a hard time then.

Now she enjoys both of her CIs and is a true chatterbox who never stops talking.The only times that I could enjoy some peace and quiet is when she is asleep (late) and napping (rarely). We still haven't tested her recent language skill though we suspect that she is already on par with her peers.It's a tricky thing since we don't have any form of formal testing and no norm in Malaysia where most children are multilingual.Miss R is bilingual with Malay as her first language and English her second.She is learning some mandarin in preschool but we are opting for extra English class in replacement of Mandarin class for next year.We'll just keep her bilingual at the moment.

She enjoys listening to music (something that I couldn't imagine before) and going to participate in talent time contest in December organised by Opus academy of music.All the preparation is being done by the dedicated teachers so I can't write much about this.We'll start her on an instrument (most likely piano) next year when she is more ready.

So,now she looks like other kids and does things that other 4 year olds do except that she has extra gadgets on her ears.Maybe soon I will teach her how to explain her CI to other people.

Now,the only area that needs a bit more adjusting is her social skills.She's fine in preschool and daycare with familiar people but she tends to be very shy with strangers or new people.She will need at least 20 minutes of warm up time before she starts talking.
It's really ok, but it's not fun for me especially when I want to show off my talking child and the miracle of CI to some new people and my chatterbox child decided to keep quite and ignore the person who is talking to her.I have no idea what motivates her to do this, probably only the sheer happiness of exasperating her mother.God knows.

Before, I couldn't stop thinking about her deafness.Now,it has become a non issue.She could hear and talk like other children.Putting on the CIs has become second nature like putting on shoes or socks.Something that  I couldn't imagine possible but is IS possible with a little bit of work and perseverance.

Cookies fun

Miss R is doing very well  with her hearing,speech and language development.So I'm constantly looking for new activities to do to give her rich language experiences.It helps that she loves story books so we could use the books to further enhance her vocabulary.It doesn't help that she normally have loads of homework every day so we have to spend a good portion of the night to finish them.When you're dealing with Miss R,you'll hear a thousand excuses of why she simply can't do the homework - My favourite would be the cat is watching her.I have no idea how a cat can disturb her by just watching from afar.


Anyway,with the Aidil Fitri holiday coming,we decided to make some cookies for her teachers.Here I must confess,I'm not actually a baking person.I cook ,but I just don't bake.I baked cakes before using pre mixed stuffs that come in a box ( hey,don't judge me!)
Anyhow, we made some following a recipe a found in a magazine. Rhianna loved playing with the dough ,decorating her cookies and of course learned many more new words.The cookies turned out a bit hard but Rhianna ate them saying they were nice ( probably because she made them).

No,of course those cookies didn't reach the teachers.We have plan B - store bought cookies (again,don't judge).At least this time I know the cookies taste nice and Rhianna still participated by making the cards to stick on the boxes.

So these are the cookies that made it to the teachers.We had fun and all is well.

They are family too!

We love our pets.They are troublesome for sure but they are entertaining.I grew up with cats,rabbits,hamsters,turtles and fish and now I think my daughter is following in my foosteps.

Meet rhianna's pets :

This is Sam.He was actually my cat but Rhianna claimed him as her own.He was a fat,grumpy cat with attitude but was always so gentle with her.I thought that he hated her for stealing all the attention ( he was the 'baby' before the real baby came) but I found them sleeping like this one day.So I guess he loved her in his own way or maybe he was trying to reclaim his position as the 'baby' in the family.One could only guess.Sadly,he passed away at the age of 10 of rich cat's disease (diabetes).We still miss him.

Meet Benben.He's the sweetest (though not the brightest) cat ever.After Sam's passing,he became the object of torture for Rhianna.He would let her do anything to him.What I love about Benben is that he is a willing model.Here, he was posing for a book that I made for Rhianna to teach her about preposition.All I need to do is put him somewhere and he'll pose.He's such a good sport (or maybe not very bright).

Agent Scully aka 'the wheel of blades'

She's called Scully because she's smart and nosy.She investigates every moving things and every sound that she hears.She's also good at being invisible (a smart cat will acquire this skill to survive living with an active child)The photo is blurred because she hates people getting too close to her.If you try to cuddle her,she'll turn into 'the wheel of blades' and you might get hurt.She's the only pet that escapes Rhianna's torture.She's smart remember?

This is Spots - the baby eaters.She got the guppies from her playgroup with other CI kids.They were working on pets theme so everybody got to bring back the fish.She has 4 guppies- all named Spots (go figure).I love to watch them but I get stuck with the cleaning as the rightful owner is too young to do so.They are baby eaters seriously.One of the females was super pregnant and one day she was flat but no baby fish was seen anywhere.It disturbed me for days.I have 5 baby guppies from previous breeding though.

Nemo - the demonic fish

She's orange so she's Nemo according to Miss R.Another fish acquired through pets theme,this time from her preschool.And again,I get stuck with cleaning the tank.If you wonder why Nemo is alone,it is because she is super territorial or perhaps demonic.I tried giving her a partner twice but both times she bit the males to death.So alone she is as she prefers to be.

So these are our pets which enrich our lives in so many ways.They provide my daughter with so many language learning directly and indirectly.They teach her to care for animals and the responsibilities of a pet owner.Ok,she is still learning in the second area.

p/s : there was also Kiki the stray cat who adopted us as his family.He was a free spirited cat who later became a victim of hit and run.We still remember him with love.

Bilateral joy

I don't post here as much as I would like to.Mostly because I don't have much to report about the Girl's progress...or maybe there is too much to report that I don't know where to start.

I remember thinking before her second implant that it's gonna be hard to take care of two equipments,training the new ear and maybe dealing with her resistance towards the new implant.

It turned out,she loves her new implant and the new ear needs very little training and is now almost as good as the old one performance wise.Taking care of two equipments needs a bit adjusting but is nothing compared to the joy of having a bilateral child.
Every night when I take off her processors I have this sense of joy and contentment knowing that she has bilateral hearing.

I know she loves her two 'ears'.If you tell her that she can only wear one processor,she'll tell you that she wants BOTH of them!
Believe me, I tried. Last month at the beach I thought that it would be too troublesome/risky to let her wear two processors to the beach,take them off to swim and put them back again to play in the sand.So I told her we'd only take one and she grumbled the whole time there.

She now speaks with better articulation.She still occasionally struggles with some difficult sounds but she is mostly age appropriate articulation wise.She's learning to localise sound and her incidental language learning is phenomenal.
She sings all the time.It still takes her some time to learn a song but I like the the fact that she now asks me to explain every new song or rhyme phrase by phrase.It is now not enough for her to just memorise a song,she wants to understand it.

She's doing wonderfully at preschool.She counts to one hundred and she can write them too.She reads simple words,writes her own name and knows all the phonic sounds.She's learning to add and substract.She has many friends and she loves being there.

It never fail to amaze me that she's doing all this wonderful things at just under 2 years of being implanted and I thank god every night for his wonderful gift - this beautiful child of mine.

Glamour girl

Ever since she received the tutu skirt as a belated birthday gift,she has been prancing around in it begging to go to a ballet  class.Then,she begs to shop for new blouses with glitters to wear with the skirt (check out the pic).She's also begging for another tutu skirt (purple,this time).If I knew that this tutu skirt was going to cause me so much problem,I would have stopped my friend from buying this for her.

In another development,the new ear's progress is fast and steady.Her understanding with the new ear alone is almost similar to the old one,only that she might need some repetition at times.So I guess it is still pretty effortful to hear with that ear alone.

She's doing very well in pre school too.She counts and writes up to 30,understands quantity concept (they're starting addition soon),writes her own name independantly,recognises both upper and lower case alphabets.She reads familiar words quite well and was 'outstanding' in spelling activities according to her teacher...well,as outstanding as a 4 year old could be, I guess.

I'm glad that she's picking up a lot in school.She has many friends and gaining more language skills.She continues to amaze us everyday with different vocabulary and different pragmatic use of language.

We have reached a point where people who don't know her do not even realise that she is deaf...until they see the processors, if they could see it since the processors are pretty hidden now that she has short hair.

We still have many things to teach and show her though.Not just how to listen and speak,but how to grow into a strong individual.How to advocate for herself and have a positivite attitude.How to care for other people and give back to the community.How to live well and be happy with your life...for in the end this is what matters most.

New ear update

It has been one month since activation and I'm so glad to report that Rhianna loves her new ear! She wears it all the time and even asks for it in the morning.She said that she likes the old one better but she likes the new one too.I guess she could feel the difference between hearing unilaterally and bilaterally.

The new ear is also catching up very fast.Much faster than I anticipated.She could already understand 2-3 steps command wearing that side alone.She could do Lings 6 sounds at more than 2 meters distance.When tested,the aided threshold for the new CI is between 35 to 40 dB.Not bad considering that the ear has been hearing for only a month and was unaided before.So maybe it's time to start working on the new side more.

So if asked if it was worth putting her through surgery again (not to mention the money!), I'd say yes! She loves it,we love it and it works beautifully.

We did it!

We finally did it! Rhianna's second implant was switched on ,on May19th.I was anticipating chaos and hardship but it didn't happen.Boy,was I glad.

She participated well during the map but was a bit upset after the switch on saying that the new ear is noisy.I guess that's how it is if your ear has not been hearing for the past four years.Anyway,the new ear is turned on very low BUT she was able to detect and identify all Lings sounds by day 3.Yes,we started therapy at home from day 1.Not that we're so ambitious,we were just trying to get her to understand that the new ear will need training too.At first she was quite amused working with the new ear,then she got a bit bored.So we mostly work for about 15-20 minutes each night on sound detection, Lings and some early sounds.
So far this new ear is working way faster than we could ever imagine (talk about cross over effect!).

Kylie the koala is Rhianna's new best friend.She enjoys reading the book on how Kylie got her CI



The new bilateral bionic girl in her pink tutu skirt

 So far,our second hearing journey has been much easier than the first from surgery to switch on to getting her to wear the device.She's been wearing the new ear as much hours as the old one if not more and WITHOUT complaining.Hopefully,this will last forever and ever.
So keep us in your thoughts and prayers people.

She's four! (How did that happen??)

So, she turned four on May 13th and we decided to party,party,party! She browsed the net with me and selected the cake that she wanted to bring to preschool.


Well, it's pink with a picture of the princesses (What more can a girl ask for?)



With her preschool friends (yes,they only have that many children in the school and maybe 5 more not in the photo)

 They played games,sang songs,ate the cake and had a lot of fun.When I picked her up,she was very chatty and telling me all about her party not knowing that we had another one waiting for her at the daycare.



Another party after naptime with her daycare friends



With a cupcake of her own choosing


And later in the evening another party with friends and family (I said party,party,party - so we actually had 3 parties)




Cake ordered and sponsored by a friend of mine- totally amazing!



The trio - The only children in our close circle of friends


And finally the unveiling of the mysterious gift that was kept hidden for the past one month.We saw her drooled over this thing in the store and decided to get it for her birthday and also to celebrate the 'birth' of her new 'ear'.She knew this thing is (damn) expensive and didn't even (dare) ask for it.



Behold the Rosebud dollhouse or the Pink House as Rhianna calls it.



Inside view of the Pink house.It has three floors including the attic

 We only got her the bedroom,living room and kitchen furniture so the house is still quite empty.We plan to do some reward system to get her to work more on her new ear and 'earn' more furnitures for her pink house.Hope it will work out and motivate her to do more therapy.See,we never spend money unecessarily.All her toys were carefully selected and geared towards therapy.

So,that's her birthday story.Yes, she was thoroughly spoiled for the day after all you only turned four once!

My best gift

To all wonderful mothers out there, Happy Mother's Day!

We might get cakes or cookies,roses or other gifts..but the best one(s) came from God.



This is mine - Born on Mother's Day 2007

P/s : She was initially smiling but after holding the smile for a few seconds, it kinda turned into a grimace

                                            

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.

The MAP story

Rhianna hates MAP sessions.All of them.Period.If she ever cooperated in any of them,it was because she wanted to (not because you told her to) but she still hated them.If she ever dropped anything in the bucket when she heard a beep,she did it pouting.

I remember when she was just activated and we had to MAP her every other week - pure hell!
No amount of bribery (or threat) would make her cooperate.Luckily our audi Dr C is very patient and is very good at reading a child's body language in response to sound.Even luckier Rhianna's body language was not hard at all to read.She would play nicely with a toy and when she heard a beep, she turned and glared menacingly at the audi.I was quite sure that she growled and gnashed her teeth too but maybe that was just my imagination.

Anyway,last couple of weeks we had one MAP session (after 6 months of no MAPPING bliss).
On the way there,she told me she didn't want to listen to the beep beep sound.I told her she'd get ice cream,sweets and toys if she cooperated (bribery) but she just pouted.

Once there,she entered a mute zone and refused to talk to anybody.She answered questions by nodding or shaking her head and glaring at anybody who dared smile at her (charming!)
Inside, she cooperated fairly and when it was all over she was back to her old chirpy self much to the amusement of Dr C.

Now 2 weeks after, she is still adjusting to the new programs.I think this is the reason why she doesn't like new maps.All this readjusting to sounds is a bit tiring for her and it's making her cranky and a bit sensitive too.Trust me,a stubborn,sensitive and cranky child drains your energy very fast.

God have mercy on us.

Rapunzel's hair cut

Rhianna has always had long hair.After she watched the movie Tangled,she insisted that she be called Rapunzel.Recently however,her language developed more.With more language,come more ideas.With more ideas come reasoning ability.All these combined with a stubborn child resulted in a hair cut.

I love her long silky hair.She needs the long hair.Really.She's very active and a bit tomboyish so she needs the long hair to keep some girlish element.Also,I used to braid her hair tightly over the magnet piece to keep them from falling off everytime she went for her OT sessions or to the playground.

For the last few weeks however she started asking me for a hair cut.Reasons being:

1.All her classmates have short hair (except one girl but she didn't mention that,little stinker).
2.Short hair is cute (?)
3.Her name is actually Rhianna not Rapunzel (really?)
4.Everybody she knows has short hair (I'm not so sure about that)

Anybody who knows this child knows that there is no point in arguing with her.
So here are the pictures.

Setting up the length.She wanted short short!Mommy said not too short please!So we compromised on shoulder length

She wanted short bangs too

Posing with her 'cute' short hair

Again at home with her 'cute' short hair.Notice the fake butterfly tattoo on her arms? She's a future diva I told ya!

We're still around

We're still around,just a little bit busy.

Rhianna is doing very well in preschool.I had a nice chat with her teacher who said that Rhianna is catching up very fast in her language skills.We just need to brush up on her pronunciation (she's due for another map next week).We're also going to do another language assessment on her to see how much has she gained.We wont be able to tell exactly where she's at in comparison to her peers as these tests are not normed (yet) in our country.But we would at least have some ideas of her language development.

We are also working on getting her a new ear which we hope would happen soon.We are now waiting for a surgery date from our Supersurgeon.We so love this surgeon for his superb skill and he is also currently one of the best in the region...So we'll wait until he's available.

So that's pretty much our update..and also, Rhianna decided that she no longer wants to be Rapunzel and had been nagging me for a haircut for over a week.So, today she got one at a salon and has been showing everyone who would look and telling everyone who would listen (on the phone) about her new hairdo.I'll try and post some pictures tomorrow.

Singing

My child talks and sings all the time..seriously.Recently,she started sleeping with her processor on so that she can sing herself to sleep.Every night as soon as I switched off the light,she will start her medley of songs.She will sing all the nursery rhymes over and over again and she sometimes change the words to make the songs sound silly and funny...then she'd giggle over her clever words.I often have to tell her to close her eyes AND her mouth and go to sleep.I tried taking off her processor and yet she still sings with or without her 'ear'.Very funny.

I've noticed that she learns songs faster now and her tunes are much more accurate.This may be the result of her weekly music class or maybe she just listens better now.

Last weekend when I was cooking in the kitchen and she was also 'cooking' and feeding her mickey mouse, I heard her telling mickey to eat the vegetables.It was very funny listening to her telling mickey that vege taste good and it's not hot or spicy so mickey should at least try it.Later on when she refused her vege,I told her the same thing using her own words and she smiled sheepishly.

Just now when she was playing with my friend's daughter after dinner,the adults were laughing at the fact that the deaf child is talking more than the hearing child.

It has been an amazing journey to get here to this place we're at and I'm looking forward to share more amazing moments with my amazing girl.