Fighting Kawasaki Day 5 & 6

She had her 2nd dose IVIG yesterday. Temp pun nampaknya stayed below 37.5 from yesterday. She started to sit on her own. Alhamdulillah a good sign.

We manage to get an appointment @ IJN, tomorrow 21 Oct. The ambulance will take us there escorted by a doctor & a nurse.

Right after 2nd dose IVIG treatment habis ...
dah boleh duduk sendiri & main-main.
Owh that wafers tu, utk buat main kira-kira je 

Eventhough demam dah subside, ulcers satu mulut
masih blom baik ...
so still no consumption of food and drinks ..
dengan nenek, still nak berkepit

Catz: I'm nervous utk IJN esok ... huhuhu

Fighting Kawasaki Day 3 & 4

The IVIG treatment ended around 8am this morning. It took more than 12hrs since the machine pushing the the liquid stopped every hour. She will be monitored for 36 hrs, lepas tu kalau still demam lagi, they will start 2nd dose IVIG treatment. So another 12 hrs, another 9 tubes of human antibody.

Her temp was around 37.6 and stayed under 38 deg celcius all morning. So she slept all morning untill the visiting hours started.

Around 7:00pm, her temperature shoot naik ke 38.4 again. So tunggu till the end of the 36th hrs, the MO will make the decision samada kena start 2nd dose IVIG.

During the specialist visit in the afternoon, we heard a bad news. From the result of an Echo test, both Khalisya's coronary artery are dilated, and this is not a good sign. The MO will set an appointment with IJN for a 2nd opinion & Khalisya was diagnosed as Kawasaki Disease with bilateral coronary dilation.

I did some reading over the internet. Coronary dilation for KD is not a good sign at all. I'm hoping for a better result from IJN.

Practical doctors in da house

One of the practical doctors asked my permission untuk jadikan Khalisya as their subject or patience during a practical test. She selected Khalisya maybe because she's a special DS with Kawasaki disease. Agaknye la. I have no objection as long as Khalisya tak mengamuk. Lucky for them, she was sound asleep when their Prof came for the test.

Kalau dah demam, asyik nak berdukung jer .... 

Demam dah tak kuat macam before tapi
temp stayed above 37.5 kekadang cecah 38.6

Catz: Stay strong kakak ...

Fighting Kawasaki - Day 1 & 2

The Docs still tgh rule out symptoms. They have to confirm samada betul2 Kawasaki or other type of fever such as Scarlet Fever or Strep.

There are frequent visits  from the MOs, they can only identify 2 out of 5 symptoms of Kawasaki. According to their practice, to be diagnosed with kawasaki, one need to have at least 4 out of 5 its common symptoms.

In the afternoon, during the specialist visit, 4 kawasaki symptoms identified. So confirmed diagnose kawasaki disease and they will start the medication immediately.

I was briefed by the MO about the treatment, medication & risk. She will be treated with IVIG (human protein or antibodi), aspirin (to prevent blood clot in coronary artery), antibiotics and full maintenance drips (sbb tak boleh nak makan or minum). Bila MO mentioned about the risk of the aspirin, berdebar jugak hati. Redha je lah. Kita cuba sedaya upaya & tawakkal.

So once confirmed diagnose with kawasaki, bermulalah series of blood test, chest xrays, ECG, Heart ECO and dental visits.

Sampai malam ni, demam Khalisya masih belum subside eventhough dah start high dose aspirin & antibiotics. Avg temperature.

IVIG treatment suppose to start petang ni but since demam tak turun lagi. Kena postponed ke maghrib. The IVIG treatment will take 12 hrs utk kesemua 9 tube dihabiskan. So esok akan around 7am baru habis.

Sleeping ... with her eyes open.

Crying for pain ... 

Catz: kesian anak ibu 

Fighting Fever - Day 5

I went to work in the morning.

Mak call around 4, telling me that si kecik asyik merengek & nak dukung all the time.

So, I got off work after 530 and we went straight to a specialist hospital .... again. While waiting, khalisya merengek je, macam in pain. Duduk salah, dukung salah, semuanya salah.

When we finally got to see Dr Arbaiyah, she was very consent of Khalisya's behaviour, as if, she's in great pain... restless.

Her lips was so red. Her tounge was fuĺl of ulcers. I heqed Dr Arbaiyah mentioned strawberry tongue and some weird disease.

I was not feeling at ease at all, even the specialist was very consent of her condition.

Finally, Dr Arbaiyah said, "kita warded mama". I can't agree more. She needs special care since at home all of us don't know what to do.

Unfortunately, the rooms at the specialist hospital was full that night. She wrote us a referal letter so that we can go to HPJ. I opened the letter, and there it was, the unknown disease that she suspected. Kawasaki disease.

Nobody around me know what it was. I knew then, this is not a regular fever, and I don't want to even google about it. I'm trying to stay positive.

Khalisya was warded in HPJ tonite. No diagnose was given since there's no specialist.

No drugs was given to her tonite, not even a drop of PCM. The nurses recommended sponging untill they have the instruction frm the doctora.

Her fever shoot up to 39.6 tonite, and still nothing was given to her to subside the fever.

I can't really sleep tonite, her temp was so high I'm afraid she will get 'tarik'.

Fighting Fever - Day 4

Tak sampai hati rasanya nak pergi offc. Dah buat sponging all nite pun demam masih shoot sampai 38°.

Dah 2 kali ke klinik biasa. Today nak bawak ke specialist, jumpa Dr. Khairul or Dr. Arbaiyah.

Rashes dah start banyak kat bahagian perut & pelvic area. Kesian si kecik ni, merengek je.

Dr prescribe antibiotic augmentine & supp. Selalunya lepas makan antibiotic, demam akan subside.

After the thrid dose, demam masih sama lagi.

Catz: trpaksa korbankan captivate & edge training .....

Fighting Fever - Day 1 to 3

Its been 3 days of high fever. Takde sign to subside. Temp range from 38 to 40° C. Kesian my little sunshine.

The fever started suddenly, no sign of flu or cough. Bangun tido tiba-tiba temp shoot to 38°. PCM or Voren hanya akan turunkan fever ke 37.5°, ubat habis je, shoot semula to 38° or 39°.

I'm able to go to work half day on Friday tapi hati tak tenang sbb its not like her normal fever.

Since the first day sampai today, the third day, dah 2 klinik we all pergi. Both hanya prescribed voren & pcm as usual.

2nd day, rashes around pelvic area dah nampak. Quiet a bad rash. No wonder she's all cranky and moody. The only good thing was she drank a lot of water.

3rd day, bibir nampak kemerahan. She refused to drink or eat.

Clinic visitation chronology:
1st day - regular poliklinik
2nd day - hospital pakar (regular clinic)

Catz: tatau dapat ke training esok or tak....huhu

Birthday Cake

I wanted to buy a birthday cake for my little munchkin this morning. I walked into a local bakery under the assumption that the cakes there will be a lot cheaper. There were only a few cakes left and since I’m too lazy to go the ‘branded’ secret cake house, I stayed and picked a so-so-design rainbow cake. “Nak tulis apa apa?” she asked me. I said “yes” and started writing ’Happy Birthday Khalisya’ on a piece of paper. The cake was brought to the pantry for them to pipe the words on it. The young girl came out in a few minutes saying that the cake was faulty and cannot be sold to anyone. Then I chose a bluish ‘Minion’ choc sponge cake. For a minute there I thought Khalisya would love the design on the cake. And when I asked about the price, the young girl look at me deep into my eyes and said that she didn’t know the price and the person in charge was not around for her to ask. Duhh! I walked away straight to the ‘branded’ secret cake house and got me a Red Velvet cake.

Red Velvet cake for Khalisya

Happy Birthday my little munchkin .... 

Catz: thought of helping bumiputera miniaga .... 

Weekend Splash @ Teh's

Couple of weeks ago, we went to my SIL's at Mentakab for her youngest son's reception. Since hubby was working half day, so it was a late arrival for us at Mentakab. And of coz, hubby's favorite masak tempoyak ikan patin, dah tinggal kuah je. :) Upon arrival, we're amazed of the new pool Teh built for her grandchildren. Khalisya was pretty excited to see all her nephews and nieces playing in the pool. Since its getting dark outside, we've decided to spend the night at Teh's.

 The next afternoon, my BIL was kind enough to cook his signature dish 'masak tempoyak ikan patin' for us. It was superb and we even brought back some for my parents.

Teh's pool is surrounded with her fauna and flora. She sacrificed her precious flower gardens for her grandchildren. 

 Khalisya was too excited sampai tak nak get off the pool 

Khalisya and ayah ... rite after this photo was taken ... I fell flat on my back near the pool ...


Catz: *Ouch*

Like Father Like Doter

I'm not a big fan of motorcycles. In fact, I'd go so far as to say it is the mean of transportation I will avoid. I do not encourage my love ones to ride motorbikes, but both of 'em love it so much. Even my little princess will get excited just to hear the sound of the engine. She recognized the sound of her father's motorbike. She even recognized our Pak Guard's Modenas.

 'Doodoo' ... that's what she calls it ...

Khalisya & Ayah on the 'Doodoo'

Catz: I would rather walk .... :)

Siapa Aji Jabar?

Khalisya loooveees to sing & dance ... bercakap je belum pandai :) Whenever she's playing alone, she will sing to her self. Normally, all the people around her will be included in her song ... bu(Ibu), Gogok(Atuk), Deda(Nenek). But recently, there's one more name added into her song ....

Contoh lagu Khalisya ...

Gok gi bu ji ja ji jabar 
La gi de da la ji jabar
Gi ka jijabar ba ba di 

Almost every line of her song ada Aji Jabar ... Siapa Aji Jabar????

 

Sambil jalan-jalan dengan Atuk pun nyanyi-nyanyi gak ... 

Catz: Siapa gerangan agaknye?

The Mines Lake Cruise

We went to The Mines couple of weeks ago. Since hubby had a weekend day off, we wanted to bring Khalisya out for an indoor walk. Khalisya loves stairs so much so we thought she will have fun walking up and down the escalator.

The first stop was the Sweet Chat Cafe, once a familiar hang out place for me & my colleagues during lunch hours or whenever we craved for a sweet dessert. 

Then, we went to Challenger IT Store. Once Khalisya spotted the game station bucket seat, she didn't move elsewhere.

Khalisya's taking a mouse-deer ride at COBAY (a game arcade next to Challenger). I don't usually stop here at COBAY, but it was an exception that day. Khalisya was kinda reluctant to move from the game station, so, we had to persuade her into COBAY. Of course she took the bait :)

Next stop ... the lake cruise. She can't take her eyes off the water splashing from our water taxi. Since we've gone to the North Lake before, this time we wanted to experience the scenery of the South Lake. Surprisingly, North and the South Lake is not at the same depth ... read about it here. 

We're watching them & they're watching us ...

"Can we go one more round Bu?"

Catz: an expensive 20 minutes ride ... :)

Photobook Malaysia: Khalisya's First Year Photobook

At last, after a year, I've really completed my little project on Khalisya's First Year Photobook. Even though Photobook Malaysia offered a really helpful photobook editor, it all comes down to the time needed to gather, edit & design the photobook.

Why I chose Photobook Malaysia? I've never tried any other photobook service before & Photobook Malaysia offered a 50% off voucher which I consider very cheap and within my budget. Furthermore, there are a lot of complement & good testimonial by Photobook Malaysia users.

the photobook editor was really helpful for a non-designer like me ... 

large size photos will be easier to edit and publish as photobook 

I'm so happy with the output ...

Khalisya's thousand faces ...

Catz: looking forward for 2nd Year Photobook ....

Little Feetrah Open Day for 2013 Session

Its a little bit too late for this entry ...

On 22 December 2012, Khalisya's School had their Open Day for the graduation & new students. So this is my first experience going to such event since Khalisya has just started the taska session since Sept 2012.

The Head Teacher, Pn Saleema was kind enough to accept Khalisya as part of Little Feetrah's family despite of her condition and I'm very thankful for that.

Candy bar for the kiddos ... parents pun join sekali 

 

 

 A pose with Teacher Boy (nampak half je) ... 

It's coloring time in Sesame Street English class.

Khalisya learn so much here in Little Feetrah. There's tons of activities such as art class, water play session, creative movement, etc

 ... with Letzhop Sesame Street English Teacher of the day, who happened to be my co. CEO...

Check out Letzhop Sesame Street Page here

Catz: looking forward for Khalisya's next BIG step ...

My Little Princess turns 3

We had a small birthday celebration for little Khalisya this evening at her taska. The teachers were kind enough to let us celebrate at the taska along with Khalisya's friends.

Its been a wonderful year for little Khalisya ....

 I'm a lllitle bit moody & cranky .... 

A birthday gift from the teachers. She unpacked the gift, gave it to her nenek and played with the paper bag. She's more interested with the paper bag than the content. That's my Khalisya alrite ... *LOL*

Catz: Grow my little one ... may Allah bless you always ...

Just As I Am

I came across this banner in fb.

The author created the page to support the "International Petition for the Adoption of World Down Syndrome Day as United Nations Observance Day from 21 March 2012". 

The author created this video to help encourage expecting parents to save their child.

I can't help but to think about Khalisya after watching this video. I only knew about her condition merely seconds after she was born. And if the doctor could detect her condition before she was born, I'm still gonna give birth to my precious one.

Syukur Alhamdulillah, I have all the physical and mental support that I should have. And of course, despite the denial from our love ones, we managed to gather our strength and redha with her condition.

Catz:  Allah tidak akan membebankan seseorang melebihi kadar kemampuannya.

Demam Lagi

My little one demam lagi. Seisi rumah kena batuk-batuk. These few days mmg ramai yang datang visit my parents dan ramai juga yang batuk-batuk. Musim orang balik haji memang biasa macam tu selalunya.

Poor Khalisya asyik demam je, baru je baik demam.

Sempat lagi pose senyum dlm demam demam tu!

Khalisya dah boleh sebut "Kakak", she's referring to her second cousin yang actually sebaya ... physical size je tak sama :)

Catz: Ibu Khalisya pun rasa macam nak demam ...

Welcome Back Kok Aji

My parents are back from Hajj around 2:00am this morning. Apart from the coughing, they are well in themselves. I'm just so happy that they're safely back and Khalisya seems so extremely excited to see her Kok Aji & Ajah Dede (Khalisya's language for Atok-Kok and Nenek-Dede).

Thanks to friends and families who came to visit. And a million thanks to my gramps and auntie for the dishes they brought for us to enjoy together.

I'm kinda tired as I don't really get enough sleep today but Khalisya slept like a log despite all the noises around her.

 A pose with the abaya jubah her gramps bought from Mekah.

Another gedik pose from my little one with the sunglasses. Owh ... the sunglasses was a gift from Drypers Drypantz.

Catz: Rabbi Yasir Wala Tu'assir

Lunch Entry - Takmo Turun!

tak mo turun!

Asal bukak je pintu kereta, dia dah masuk dulu. Tak nak turun pulak tu, ingatkan ibu nak pegi mana lah agaknye. Ni la antara sebab ibu Khalisya selalu lambat sampai office hehehe .... *alasan*


Catz: ....

The Pox

My little one got chicken pox.

I've been anticipating for this to happen since the last kenduri we went. Today is the 3rd day after the first spot visible. Fortunately, up till today, she's behaving like she's not sick at all ... alhamdulillah.

What pox?

Catz: I might catch the pox also since I haven't got it before ... hehe

Khalisya's Hospital Visits

Up to this month, Khalisya dah dua kali warded di hospital ... in January di Hospital Pakar An-Nur and in April di Hospital Putrajaya. Both admittance was due to different reasons. Ada one morning around 3am in this month, we all kejarkan Khalisya to ER Hospital Pakar An-Nur due to breathing difficulty. In May jugak, Khalisya kena severe diarrhea for two weeks, berat pun dah turun almost 2 kg. After 3 kali visits to Paed, baru lah ok. Tu pun Dr suggest susu Pediasure untuk Khalisya since she's a picky eater.

So all in all, up to May sahaja, including physio visits, Khalisya's hospital visits dah lebih dari 10 kali.

Kena cari supplement untuk kuatkan antibodi Khalisya neh .....

Walaupun admitted ... posing tetap posing hehe

Catz: jgn demam-demam lagi tau ...