Tuesday, March 13, 2012

Family is what matters

We've been home since Mar 3, 2012. Every day is a blessing. We are at the same time amazed and glad that Shayman has recovered so well. It's back to his usual cheerful self, doing his usual 'boy' stuff.

In spite of all that he's been through, he actually remembers a lot of what happened to him during his hospital stay. Just yesterday he told me " Mommy, I'm happy now because I'm at home and not at the hospital anymore. And I can eat and drink, and I don't need the tube anymore." Such innocence. He's taking it all in stride. But he's got such a strong determination to do anything better.

And, of course, with Uncle Dhini here, he got all better in super fast time.

Life is almost back to normal. Shaayla is back at school, and happy that her brother is back. I'm so surprised that a lot of parents in her class had heard about Shayman's condition and were very concerned. They were really happy to see him every day again.

Last week, I took Shayman to visit his teachers, Ms Varsha and Ms Priya at his Challenger School (Shawnee Lane). They were so glad to see him. I could see how happy they were to see him all well again, especially Ms Varsha. The last time they saw was when he was still at Stanford. They had brought him a stuffed teddy bear, and I could tell that they were not quite prepared for what they saw. Shayman was lying in bed, only lifting his hand to wave goodbye. He was not able to speak, only managing a smile. But even then, his face lit up when he saw his teachers. I could tell that he was very happy to see them, and can only sense how much he had enjoyed school.

A few days ago, we finally made up our minds to make a trip back to Singapore and Malaysia. Everyone back home had prayed hard for him, and it was only fitting for us to make the trip. We worry about the expense, of course, but there is nothing more precious than family.

Gong Gong will be here this coming Sun, first time visiting us in California. It should be fun for the kids.

Monday, February 27, 2012

On the Road to Recovery

Day 19 : Mon, Feb 27, 2012

We are now into Day 5 at the Santa Clara Valley Medical Center. Last Wed, 22 Feb, Shayman was transferred from Lucile Packard to SCVMC to continue with his next stage of recovery - therapy.

We had spent 14 days at LPCH. It was a roller-coaster of emotions at the beginning. But we have been blessed and he's been progressing great.

We were naturally anxious about his transfer...adjusting to a new environment, to a new team of doctors, new regimen.

On Wed 22 Feb afternoon, I followed in the ambulance transporting Shayman from LPCH to SCVMC. Thankfully, it was uneventful. We settled in pretty well in a single room.

In the 5 days, he's made fantastic improvement. The image of the frail him seemed so far away, but will somehow always be at the back of our minds.

His determination to get up on his feet and regain his independence is by far the greatest motivating factor. His desire to try, never give up. We can see how hard he is trying...to walk, to stand, to maintain control of his muscles, and to talk.

The therapists had done a splint for his right foot as it was leaning inwards and they had to correct the muscles before they stiffen in that manner. But just a day after having it on, the therapist saw a significant improvement on his right big toe, and decided he didn't need the top half of his splint. The splint was to be a temporary one before a custom-made brace was done for him. But just this morning, another piece of good news. His right foot was doing so well, the therapist felt he could do without the leg brace now! Of course, they always cautioned that it was a 'let's see how he does in a day or two'.

Shayman is really vocalizing this morning. Saying his colors while doing his legos, thank you, good, enough. This boy is really trying. And we are so proud of him. We are constantly encouraging him, motivating him.

He's going to be a really happy boy tomorrow when Uncle Dhini comes.

Monday, February 20, 2012

Shayman, our little boy

It's been too long since I last wrote on this blog. Time just flew by day after day and our little angels have grown day by day.

And now I am writing again. It's very painful to write this now. It will probably be very painful to read this next time. But it is a part of our lives; it is a part of Shayman's life, and we want him to understand. It's his right to know.

On Thursday, Feb 9, 2012, our world turned upside down. What was to have been an ordinary trip to the pediatrician turned out to be something totally unforeseen. After a series of tests, he was diagnosed with ADEM - acute disseminated encephalomyelitis. We had never heard of it. It came crashing down on us like a ton of bricks.

On Wednesday, Feb 8, 2012, we had noticed that he was more lethargic than usual, and not wanting to eat or drink, and drooling. We left it as lethargy from the cold he had, and felt that since we were scheduled to see his PD the next morning, he should be fine.

At the PD's office, when his PD, Dr Susan Fong, wanted a second opinion from another doctor, we started to worry. After consulting in private, they recommended we bring him in to the ER right away. She had informed the ER to expect us and gave them the rundown of his history.

We hurried to the Lucile Packard Children's Hospital at Stanford, Palo Alto. It was an agonizing wait at the ER. Shaayla was scared. We were scared.

Shayman at the ER
We were transferred to the treatment room very quickly. By then, Shayman was barely awake. Vitals were done - normal. Then came the need for blood tests, urine test, chest x-rays, spine x-rays, and CT scan. We had to wait again for the results. They couldn't find anything. Next was to do a lumbar puncture.

By then, Suresh had taken Shaayla home for a rest. We knew it was going to be a long night.

Shayman was crying uncontrollably during the spinal tap. I was holding back my tears. They had to stop. When he calmed down, they tried again. This time, with me holding his head and hands. Another 2 nurses held him in the right curled up position that he had to be in. He started crying again. I cried this time. But thank goodness, he got so tired, he fell asleep, calmed down, and the doctor was able to remove the fluids - 4 tubes of it. Then, more waiting...for the results of the spinal tap.

(Day 10 : Now at 3pm, on Sat, Feb 18, 2012. I had placed Shayman's weaker right arm on his head and let go of my hand. He dropped it down to his eye level and kept it there for a good 20sec!!! Before it cam down slowly to his side. Told him how proud I am of him. Told the nurse!!! It showed he was able to control his muscles!!! Fantastic!! )

Before the results of the lumbar puncture arrived, we were moved to the Pediatric ICU. It was scary. All sorts of scenarios were playing in my head. I didn't know what to think. They recommended a MRI scan immediately. It was going to take at least 2 hours and I could not be by his side. I watched our little boy being wheeled alone into the elevator. I sat down in the room and waited. My mind, a blank.

Mid-way, a nurse came. She said he was doing fine. although he woke up in the middle, they gave him a sedative and he slept through the rest of the scan. But during the scan, they had also given him another 2 IVs - one on his foot and one on his arm...in addition to the one already on his left arm.

2.5hrs later, he was wheeled back in to the room. I remember the doctor, very calmly kneeling beside me, telling me his diagnosis - ADEM. I don't know what to make of it. As she spoke, I could only remember crying. I don't know how long it was before I calmed down. I called Suresh who was at home with Shaayla. He called Ramesh. I called my Mum. Sleep was gone from us. Questions started coming - what did we do, what did we not do, could we have done something, why us, why our sweet little boy?

It was hard for our families to take the news. No one really knew how to react because it was so sudden, so unknown, and so difficult to understand. Why our innocent little boy?

Through the night, Suresh and I exchanged messages on our phones. I decided it was too much for both of us to bear and we really needed all the emotional support we could get. I posted about his condition on Facebook. Friends and family started calling, messaging, and posting their wishes, and prayers. We are so thankful for their support.

Day 2 : Friday, 10 Feb, 2012
We were into day 2 of the 5-day course of steroids. Shayman was still drowsy, and very weak. We look forward to day 5 of the steroids, hoping for the best.

Over the weekend, many friends came to visit. Every one had a hard time understanding. I spoke to countless of people - social workers, nurses, doctors, even the chaplain...all in the hope of finding some relief.


Day 3 : Saturday, 11 Feb. 2012
I was with Shaayla at the post office when Suresh called. He didn't sound right over the phone. We hurried to the hospital. Doctors had told him that even after full recovery, Shayman might have some learning disability.

That thought had been on my mind since the first night. I tried to push it away. But with the doctors telling Suresh, I had to confront it.

We were going to be strong and work through this with Shayman.


Thanks to Arthur and Natalie, Shaayla had a good weekend with them and Suresh and I focused on Shayman.

Day 6 : Tue, 14 Feb, 2012
It's Valentine's Day. On this day of love, we wanted nothing more than to hear our little boy laugh again.

Yesterday was the last dose of steroids and today was observation day to decide the next course of action.

Late that night, it was decided. They tried to rouse him from sleep and finally had to pinch his toe to wake him up.


Day 7 : Wed, 15 Feb, 2012
This day was to be day 1 of IVIG. It was basically introducing immunoglobulin into him. But it was not without possible side effects - fever, chills, rashes, erratic blood pressure...I felt myself holding my breadth as the doctor went down the list.

10mins before the IV started, nurses came into the prep the room...breathing masks and a whole lot of other apparatus. It was nerve-wrecking.

Thankfully, the 3.5hrs of IV went by uneventfully.


Day 9 : Fri, 17 Feb, 2012
3rd dose of IVIG was completed today. We could see improvement every day since the IVIG. He was more alert, His reflexes were improving.


Day 11 : Sun, 19 Feb, 2012
Shayman gave a really big smile today. Ms Varsha and Ms Priya from his preschool class at Challenger School paid him a visit and he gave him a really big smile. It made our day.

Day 12 : Mon, 20 Feb, 2012
The weekend was observation, monitoring his progression. Doctors were also monitoring his sodium level as it seemed to be on the low side.

Because he was coughing slightly, doctors started him on a 5-day dose of antibiotics, just to rid his body of any viruses.

Last nite, he was fussy from 12 to 3am, poor Suresh didn't manage a wink. Hopefully he does way better tonite with some benardryl.

It was a good day, overall. It was the President's week holiday for Shaayla, so she came in to the hospital with me. She was a wonderful big sister...cheering him up, reading to him. And most important, playing with the iphone. That perked his attention and I was able to get him to sit up for a good 20mins.

Friday, October 2, 2009

Visit from Dato Seri Anwar to the Bay Area

Monday September 28, 2009. I met up with my Malaysian buddy Wong Soon Seng at the New Penang Garden restaurant. Both of us were excited for what is to be our chance in a lifetime face to face meeting with Dato Seri Anwar Ibrahim. He is truly Malaysia's last hope for salvation, I believe that he can make a difference, despite what most people say. The country of my birth has gone to the dogs, so to speak.

Dato Seri was giving a speech on the current developments in Malaysia and what his party's plans are for the future of the country. We in the Bay Area have seen and heard stories that are sometimes hard to believe. More and more minorities in Malaysia are leaving the country, frustrated by the corrupt and unequal system.

According to Data Seri there are about 4 million Malaysian all over the world that can make a difference not by voting but by providing campaign contributions. He can't seem to understand why Malaysia does not allow for overseas voters to cast their votes from Malaysian embassies whereas every other country in the world (even the 3rd world countries allows it) allows it.

The speech was fantastic, everyone had a renewed interest in their homeland and was spurred on to contribute to the cause.

I personally had a chance to take a photo with the Dato and proudly sent it back to my family in Seremban. Imagine this, none of my family members living in Malaysia could get this chance but I got the chance half way around the world. I think it's a sign. Something tells me that next election is going to be a blast and there is going to be bloodshed and new victory for the opposition party. I hope I get to witness it or be part of it.

I just hope that my family will be safe when all hell breaks lose.

Thursday, June 4, 2009

A Milestone for Shaayla

I can hardly believe it. Shaayla ended her Jr K year at Merryhill School today. From the scared little girl who first attended preschool in Dec 2007, she has grown so much. Her reading skills amazes us all the time. It seemed like only yesterday when I was teaching her the ABCs, now she can read entire storybooks by herself. She has a voracious appetite for reading and the many books she has never fail to give her joy. She used to pick a book and run to us and curl up as we read them together....now we curl up and listen to her read instead.

She has achieved so many things in her past year in Jr K. And the person who influenced her the most was Ms Aimee, her Jr K teacher. She was funny, patient, and always took the time to talk with me to help me understand problems that Shaayla had coping.

It's going to be a challenge to keep Shaayla advanced as she starts elementary grade in a public school. As parents, it's up to us not to fail her.

A Long Journey to Our Own Home

On May 9, 2005, we landed in San Francisco, California to start a new chapter of our lives. On May 27, 2009, 4 years later, we stepped into our very own home here in San Jose, California, USA.

It's been a long hard road, through uncertainties and struggles over the 4 years, to be able to finally sit down in a home that we can truly call ours. As Suresh and I locked the door for the final time at Amberwood Drive, we took a deep breath and reflected on our lives from the moment in 2004 when we decided to take the plunge and packed our bags (and our lives) and move thousands of miles away from our family and all that was familiar to us.

Our first year living at Rivermark, Santa Clara, went by in a flash. Shaayla turned 1 year old on Nov 19, 2005. We went on our first holiday to Las Vegas during Thanksgiving that year, making that our first road trip. The following year in Mar, we had a great snow holiday up at Lake Tahoe - Shaayla's first time toddling on the snow.

Barely a week after moving into Amberwood, we made a trip back to Singapore & Malaysia for Shamini's wedding in Aug 2006. Shaayla and I stayed till Nov and grandparents really enjoyed her presence. She's grown so much since they last saw her. 2007 was a year of many achievements for Shaayla. She started many classes - mandarin, ballet, music, and gym. Every day was a joy watching her grow and learn. In April 2007, Suresh's Mum came to live with us for 6 months. We vacationed in Yosemite and LA and of course, Disneyland.

Every now and then, we have to remind ourselves to be prudent with our expenses. We never really thought about where we were going to settle down for the long term. I think it wasn't because we were not sure, it was rather we were so caught up with the daily grind of balancing our monthly budget. Living on a single income meant thinking twice before making a big purchase or going on holidays.

Although it was a small rental apartment, Amberwood held many fond memories for us. Two things will also be remembered - in Dec 2007, Shaayla started attending preschool at Merryhill School. I think I took her going to 'school' harder than Shaayla. For 3 years, I've been with her almost every day - going through joys and pains with her, watching her learn, picking her up when she fell - it was hard seeing her cry when we left her at the school in the morning. But it all turned out fine and she even made a friend on her first day of school.

Amberwood will also be remembered fondly as we welcomed Shayman to our family on Apr 19, 2008. My Mum had barely recovered from her jetlag a week earlier and this little bundle couldn't wait to join the world. Big sister, Shaayla, was all ready to take on her duties.

Day by day, news of the US economy threw a pall of doubt on us. Suresh left NetApp and we took a break at Fort Bragg. After he joined AMCC, he was definitely much happier - more work, but he was happier that he was learning things.

As the US economy made a downturn, the Singapore property market was soaring. In Jun 2008, we made our decision - sell our first property in Singapore, so that we can afford to purchase a property here in California. It couldn't have been a more opportune time. Property prices and interest rates in California were slowly cooling off. With federal housing assistance programs, it looked like we could finally afford something.

It was a long process with tonnes of paperwork, lots of documentation and many weekends of scouting neighbourhoods. Perhaps the thing that kept Suresh and I awake most nights is the worry of making sure that Shaayla and Shayman have the best education that we can provide them with. On a single income, we have to face the reality that private education for both of them will be beyond our means. We therefore spent many hours, often late into the night, researching on schools, areas to live, and of course, punching the calculator.

When we finally found this house, we thought 'how can it be otherwise'? The house numbers were good, the location was good, the house was reasonably upgraded, and it was at a price within our budget. We thought - this was it. But we didn't expect to be caught up in the middle of a sad family situation for the sellers, so things were delayed as we went through many rounds of negotiations. Even with the sellers agreeing to the sale price, we still held our breath as the underwriter sifted through our documents. It was not till May 14, 2009, when both of us signed on the title deed, that reality sunk it - we now own a house. And on May 27, 2009, with moving boxes sitting all over our house, we settled down for the night in a home to call our own.