Iron Hug

Since Vera turned 5 last month, she has been into hugging with a vengeance.

Her grip is tenacious. It's almost a strangle, and we have to pry her hands apart with some force.

To think Vera has lived to this day to give me the longest, tightest hugs I've ever gotten in my life. She won't ever learn to speak, but she sure has learnt to love.

And it is pure and simple every time.

Vera is 5 Birthday Photos

Here are some photos of Vera's birthday party. They were taken by Norman Ng, a professional photographer - www.normanng.com

Mai Mai lends her party hands to bring the garden theme to life.

Vera starts hugging everyone who comes near.

Yummy Strawberry Mille Feuille cake from Glace
and melt-in-the-mouth cupcakes by Auntie Jackie.

"Can I eat this?"

Daen Starts Pre-School

Today was Daen's first day at a kindy.

He was previously at a full-day childcare till we took him out to minimise illness which would worsen his arthritis.

This time, it's just 2 hours a day. Hopefully, this would strike a balance between infection and giving him a bit of mental stimulation and build his socializing skills with peers.

The school is nestled in forest, with classrooms having a view of casuarina trees, boats and the sea. I wish it were my pre-school!

Vera is 5

Dear family, friends and teachers,

Thank you for being here tonight to celebrate Vera’s 5^th birthday with us.

I’d just like to say a few words before we sing the birthday song.

5 years ago, Vera’s arrival threw us into the special needs world.

Family members and friends were there for us.

While it was a world full of machines, medicines and mayhem, it was also a world filled with kindness.

Mothers pumped and offered Vera their breastmilk. Others helped us buy medical supplies.

At our lowest moments, mothers with Trisomy 18 children miles away in the US, became our pillars of support.

Yet more kindness came our way when Vera started school at Yishun Park Rainbow Centre.

Teachers and therapists engulfed children like Vera in a sea of love. Accepting their every flaw, celebrating their every step.

During frequent hospital stays, we became closely in touch with people who help people – surgeons, doctors and nurses – and saw the good work they do each day.

So on behalf of Vera, thank you all, for touching our lives in your own special way.

Vera is 5!

To all Vera's milk mummies, mummies who donated supplies, mummies who help us import supplies, Trisomy 18 families here and abroad who form our support network, teachers, therapists, surgeons, doctors and nurses who have helped Vera - THANK YOU!!!

Most of all, thank you to our families and friends for being there for us all the way. And to Beth for the headaches, backaches and countless nights of interrupted sleep and irregular hours that come with looking after a child like Vera. 

Chinese New Year 2013

January flies by and Chinese New Year is upon us.

As my granny gets older, she is Ninety Three (gasp!), every year becomes a celebration of her still here with us. A living legacy.

Oh what joy fills her heart...bless my dear Granny.

"Red packets over here, thank you very much."

"Hmmm...let me see who's this guy?" 

"I think I'm getting the hang of the red carpet routine."

"This is my dear Mai mai...we go waayyy back, yeah"

A Darlie moment

This aunt helped looked after my bro and I when we were kids.

This aunt has just the thing to keep Daen sitting still - Youtube TV! 

Gong gong, Papa and Daen - don't they look alike? 

They can play all day...the chemistry is unmistakable. 

All together now.

Happy New Year from Vera and us to you and your family! May the Year of the Snake be a slithery smooth one for you : )

Joyride

"Mama I love looking at the scenery!"

"Checking her out in the baby mirror"

Driving Vera to school is such a joy now. With her eyesight getting better, she now looks out the window at the moving scene more and smiles. This is a far cry from when she was younger. She'd fuss a lot, sometimes the whole way.

Throughout the journey, I check her out in the baby mirror, sometimes for longer than necessary, just taking in the joy of the ride together.

Making Sounds

Puckachu (as I call Vera) has been puckering her lips and making sounds.

It's her newly learnt past-time.

Over the past year, we've noticed more mouth activity:

1) Sucking and chewing expertly on her index fingers

2) Puckering her lips into a 'siew mai'

3) Brushing her lips left and right on our faces

4) Wanting to bite our faces

5) Able to hold Ark Probe and insert it into her mouth and move it like a toothbrush

We stopped Feeding Therapy after it triggered an aspiration episode when she was much younger at about a year old.

Now, I get a sense that she is ready to pick up where we left off. But we'll definitely tread with caution this time. Who knows, the little porky may surprise us along the way!

It would be fantastic if she could one day enjoy the taste of food.

Back To School 2013

Today was Vera's first day back at school. She met her new teacher and had hydrotherapy. We had an awesome session.

Although it's been 2 months since she has swam, she took to the water like a fish. She kicked more than before, and was calmed throughout the 1 hour session. 

Seeing her move her limbs so vigorously in water is such a joy for me. The water frees her to do her thing! Perhaps that's why she fusses so much at home. Because she wants to move around by herself but can't. 

I am so looking forward to the next session. And so glad I can be working part-time to enjoy it. 

Flu Bug

It was all going well till after Boxing Day.

I was already counting the days down to being able to say 'No more falling sick episode for Vera in 2012!' when she falls sick.

Just one night of waking up to suction her and I was knocked out for 2 days after to recover. Really getting older! It's scary to think I won't have the energy to look after night owl Vera myself, when the need arises. For now, I am just thankful to have Beth to care for her.

New Balance

Finally Vera gets her new customised AFOs and shoes to fit them. She has outgrown her bendable first pair and refused to stand in them.

So far, she seems happier in these. They are hard plastic and gives her the extra support she needs now.I'm happy she's able to practise standing again.

She Learns to Hug Us

2012 is the year Vera learned to hug us. She is coming to 5.

And it is such an incredible feeling.

Imagine this: You are carrying her, and she locks her arms behind your neck, and pulls you towards her face and smiles. Repeatedly. She can even give you a tight squeeze. With arms still locked, she rubs her chin fervently against your face in glee.

"Don't let me go" she says without words

I think she has learnt that hugging keeps us by her side for longer. And that it helps her to have something to hang on to for balance.

For us, a moment worth a thousand words

With a special child, the joys are usually simple ones. And perhaps these are the ones that truly matter.

Vera Pulls Up To Sitting

Last year, she pulled up to sitting with 2 hands. Now, she can do it with one hand.

She enjoys it. We are so proud of her.

She can also sit "W" willingly. This is recommended by her school PT as it is good to counter her curved spine.

Meanwhile, there's a flu bug going round and both caregivers (my mom and helper) are down and out, which means busy busy Ian and I. But just looking at the picture below, it's totally worth it.

My two reindeers

Daen Get Gastroenteritis

Knocked out from too much vomiting.

Two weeks after Vera's stomach infection, Daen gets it too. It seems viruses that cause Gastroenteritis, or an infection of the intestines, such as the Rotavirus, can remain in stools for up to a month after they recover. Daen could have caught the bug.

Gastroenteritis is characterised by Fever (Vera yes, Daen no), persistent Vomiting (Daen yes, Vera no), and persistent Diarrhea (both). It seems different people get different permutations of symptoms. I am VERY glad Vera escaped the vomiting.

The difference in the outcome: Daen's lost 400g, but Vera, thanks to tube feeding and lack of exercise when sick, put on 400g instead!

Bye Bye Milk Teeth, Hello New Teeth

"No splints please, it's my past-time!"

Three of Vera's front milk teeth went shaky and came off. She is coming to 5. It is probably speeded up by her biting down on her index finger all day long.

"Where did my teeth go?"

Due to her small jaw, her teeth are crowded together and misaligned. I don't know how 3 big teeth are going to fit in that tiny space.

Losing teeth and having new ones break through the gums seem to be causing increased salivation for Vera. She chokes more often on her saliva. We hope this is a temporary issue.

Meanwhile, school's out. And we have Physiotherapy "homework" to do with Vera. Mummy better not get lazy or forget about that!

Daen Plays with Vera

"Now what's this guy gonna do to me now?"

"Not funny bro..."

Customised Feet

Getting a mold of her feet for the new customised AFOs. They will give more support to her feet while standing.

Mold created using plaster of paris. What an ingenious material.

Vera will be getting her first pair of customised AFOs. We will see in about a month's time how they look like on her and if they will improve her standing time.

Meanwhile, chubby is happy to sit around. She can sit by herself for up to 10 minutes now.

In The Blink of an Eye

In the blink of an eye, Christmas is upon us. 2012 goes down in our book as the year of drama, second only to the year Vera was born in 2008. As they say, life is cyclical, so 2012 was peak No. 2.

September will be the month to remember (or forget). When we learnt of Daen's Juvenile Idiopathic Arthritis (JIA) diagnosis, and Vera's Epilepsy diagnosis. Not to mention my dear 92-year-old granny having a mild stroke.

As we roll into November, Daen is on medication for his JIA, weekly jabs (MTX) at the hospital for an indefinite period of time, and Vera is on seizure medication (Epilim) for at least 2 years ie till 2014. She has stabilised on the medication and is not as sleepy as when she first started on it. But it has affected how perky she is overall. Less smiles, less motion, less energy. But we'll take it if it means No More Staring At the Ceiling And Jerky Hands and Stiff Legs.

Granny loves to spend time with Vera so the long weekend was a good opportunity to have her stay over. Like a child, she enjoys being brought out. So although it was quite an operation - my helper and I brought the 3 of them to IKEA: to create memories with old mama and chea chea Vera for Daen.

Tree decorated with toys at IKEA. The sign says "Cute, cuddly and doing a great job." Which sums up my two babies. 

Tree

This picture on the internet spoke right to me.

This tree is who I am.

This tree perched on a rough, barren, mountainous outcrop. Steady at the base, but weathered and bent in odd angles at the top. Yet, signs of life burst forth, the tiny leaves show. In the waning light, you wonder if the gaping hole betrays an emptiness inside. And that little bird? That's Vera, the little 燕子 or "yen" zi (sparrow) that will grow wings and take flight some day.

Not Fits, Not Spasms

Just 4 good days of Vera back to her normal self and we’re back with her in the hospital.

She has started having the 'Episodes' again: Eyes looking to the corner, hand jerks, stiff legs.

Consistently once a day, each lasting for up to 1 and a half hours.

This time round, the EEG was put on her for a longer period, and managed to capture an Episode.

I am calling it an ‘Episode’, because, as it turns out, what we are seeing above turns out not to be fits. No seizure activity shows up on the EEG when she was having the Episode.

So what is it then?

The senior neurologist’s take is that this is a development of her Trisomy 18 brain. Making her lose some control, or altering some of her ‘regular’ movements. This may become her 'new normal'.

The good news is that, since it is not seizures, we need not panic each time it occurs. This takes a great weight off our shoulders. (If it were seizures, we have to give medication in 5 minutes, or there will be some brain damage.)

The good news is also that the EEG shows that it is not spasms.

However, it is clear that her EEG is not normal – which is totally expected due to Trisomy 18. There is evidence of seizure-triggering activity, which means she is highly prone to having seizures. She will be on anti-epileptic medication Epilim for a minimum of 2 years.

Daen’s Arthritis

Meanwhile, the swell on Daen’s ankles have subsided, I would say by 70%. It remains to be seen if it will go away completely. He still walks with a visible limp.

Daen is also getting well acquainted with hospitals. He looks forward to going to “chea chea Vera’s hospital” NUH, and knows his hospital is KK.

The pronunciation bee can, at 2 and a half, say the word ‘Rheumalogist’ & 'Photosynthesis'. Perhaps a career in medicine or botany (think long big words) may be suitable for him.

Post-Hospital Burnout

I'm finally burnt out. 

After coming home with Vera from the hospital. I sleep and sleep, and feel like I'm falling sick. 

"That's because you don't take your vitamins," Vera's caregiver Beth says. She has been faithfully taking hers every day. 

We come home to Daen, and hacking away with a cough and cold. 

And as expected the ankle swells again. The immune system is on overdrive, attacking the virus, as well as his joints. How I wish I could teach it a simple lesson of identifying good and evil. 

Vera is not anywhere near back to her normal usual self. 

She is drowsy most of the time. More panda-eyed than ever before, but not able to sleep by herself still. And waking up crying several times a night. 

I wish we knew what was wrong, then we could find a way to help her. 

For now, I surrender to sleep to overcome the burnout.

A Good Sleep

Vera is discharged today after 5 days in hospital. 

She comes home with Epilim, targetted to reach 3ml 2x/day.

She seems rather drowsy most of the time, but we understand it takes a while for the body to acclimatize to the medication. 

Let's hope she responds well to the Epilim and it keeps the seizures at bay. 

Mai Mai, who helped look after Vera in her beginning months, visits.

Able to smile for the camera again.

Feeling the texture of a balloon.

What we love about NUH Pediatric ward is the greenery that surrounds it. The beds face Kent Ridge Park and there's a big playground next to it. It's a great place for children to heal in.

Daen visits his chea chea

Myoclonic Seizures

We spent the weekend in hospital, and today being a Monday, they were suppose to schedule an EEG for Vera. Beth called me at 8am to say they were already preparing her for it.

We were expecting perhaps by end day, but there was just one slot and Vera got it. We would have had to wait until Friday for the next available slot. 

Vera undergoes her first EEG, which reads her brain activity. By reading the waves, doctors can ascertain which part of her brain is showing "irritations" which predisposes her to fits. 

They recorded her brain activity while awake (10 minutes) and then gave her some sedatives to put her to sleep to get another 15 minutes of activity while sleeping. Because the activity that causes fits is usually in the period going into sleep and coming out of sleep.

Waterfall of wires to plug us into the mysteries of the brain.

Within minutes, the Neuro team was in the room to answer all my questions and bring clarity to the matter. Her neurologist Dr S came, read the EEG, saw the video I posted and shared her observations.

The results show 3 areas of her brain with abnormal activity:

a) a point on right side which presents as either muscle pull at mouth or hand jerks;
b) a point on left side
c) a point at left occiput (back of head)

Dr S confirms that the video shows a cluster of myoclonic seizures as well.

Her plan is to start her on Epilim. And this will be at least for a period of 2 years. If she remains 'seizure free' for 2 years, then can we start to wean her off the medication.

Her dosage is currently at 1ml twice a day. They will progressively up it to 3ml twice a day, over the next few days, to gradually get the body up to the required dosage for weight. The side effect of any fit medication is drowsiness. So we pray that the doctors will find the right dosage that would be just enough to control the  seizures without making her too dopey while she's awake.

I do still want my excitable little girl : (

I thank God for the speedy team effort this morning, diagnosis and medication. I will write more later about the excellent team at NUH. Vera is now drugged out by the hydroclorate, which was the medication I had intended her to get when I checked her in. I know that with this, she will have a very good long sleep and really get the rest that she needs. It is a short-term medication, but we've seen how helpful it is in resetting her sleep clock.

Meanwhile, since she is well-monitored in the ward, the Respi team will attempt to titrate her from 13/7 up to her recommended setting of 16/7. Given our past 3 failed attempts to even reach 14/7, this leap, if successful, will be nothing short of a breakthrough.

So many miracles already have shown themselves through this little girl, from the day she was born. Her chiropractor said to us, 'She is a miracle'. I now know she is a gift from God, so bursting with multiple miracles that I just cannot not see.