Myoclonic Jerks Return

In September 2012, Vera had fits presenting in the form of Myoclonic jerks for the first time. They went away after she was started on Epilim.

Less than 2 years later, they are back again.

Again she stares at nothing with a stunned look. This time, the pattern is non-stop clapping interspersed with the jerks. She goes into 'The Mode' once she is left alone.

We should have increased her Epilim dosage as she grew but we didn't. Lesson learnt.

Now let's hope that we can move up quickly to a dosage that will put this under control and I can have Vera back to her normal self.

Gift from a Reader

We received a gift for Vera from a reader of our blog.

Thank you Shermaine for the thoughtful gift - it is perfect for keeping her occupied while in her chair, and it fits nicely on the tray.

We have been lazy to work on her gross motor skills, so this is a good reminder. Will post again when Vera masters the toy - I hope one day she will!

She Needs A Proper Chair

Vera needs proper seating with lateral supports to correct her S-curve Scoliosis. 

Currently, she is still sitting in this Canetons chair. She slants, slouches and slides in it. Not good.

This Rifton Activity Chair R850 was hiding in the corner of the classroom unused for weeks until mummy took the initiative to try Vera out on it. I'm happy to see her sitting snug and much more in midline. She also did not fuss as much while doing art and craft in it. 

Thumbs up for the Rifton Activity Chair...now to work out how to order one for her for home.

Your belated Birthday present coming soon Vera!

Vera is 6

We had a small gathering with close family, in contrast to the big do last year.
How do we know Vera was excited? Well, she slept at 4am that night!

Daen's Birthday wish for Vera: "I wish Chea Chea can learn to eat food." Unprompted.

A Good 2013

I did a quick check and found that there were fewer posts in 2013 compared to 2012.

It's a good thing. It just means that things are going well with Vera, so I have less drama to blog about. 

In 2013, she had 2 hospital stays - one in June and another in December - both for gastro-enterological infection, with prolonged bouts of Diarrhea.

So far we are averaging 2 hospital stays a year, so I'd say she's doing alright. 

Here are some updates that we are very thankful for: 

1) Fits: Vera's myoclonic jerks (fits) have not resurfaced since September 2012, when she was put on fit medication Epilim. The course of treatment is 2 years, so by September 2014 if she stays fit-free, we can be on our way to weaning off the medication. 

2) Breathing: Vera's biPAP breathing requirement setting has remained largely the same. Results from the sleep study done end of 2012 are out and her requirement is 15/5. This is lower than the 15/7 she is currently on. This is the first time the settings have gone down instead of an expected increase. This is a reassurance that she is well supported for her breathing during sleep, or that she is growing stronger and doing more of the breathing work herself.

3) Gripping: Vera has starting to grip simple objects with her right hand. She has gradually become more open to holding things, even if it is for a few seconds. 

4) Kicking: She has discovered the joy of kicking, and loves it best when in the pool. Feeling her move so freely and joyfully in the water makes me wish I could bring her swimming every day. 

5) Visiting: We brought her out to more CNY house parties this year. When she was young, she hardly visited, for fear of infection. We're happy that she's stayed healthy throughout the festive period. 

So 2014, please be good to us. To Vera's fans who have been following us over the years, you have a good 2014 too!

Happy Lunar New Year 2014

Double Happiness - Leona and Vera, our Trisomy 18 miracles.

We visited Baby Leona during the Lunar New Year. She is growing well, has great eye tracking, and has passed her hearing test. What joy it was to be able to carry her for the first time. We know how precious the moment is because of how few of us there are. While others wish to "huat ah!" (make money) during this season, all we hope for is health for our babies.

She Prefers Mummy

Can this T18 girl recognise her loved ones? More than that. She shows her preference clearly.

When Mummy appears on her radar, Daddy is immediately forgotten.

She can't speak, but she expresses through her vocalisations. I can now differentiate the sounds for "Come to me" and "Finally, you're here". Her beckoning, her joy, her fierce hugs, are priceless.

Kick & Clap

This is how she shows you she's super happy to see you and have you carry her.

Green Getaway

Ian and I took a one-day kid break. I wanted to check out Singapore's green belt, the Southern Ridges. In this built-up city of ours, green is hard to come by. We were lucky to get a room with a view of Mount Faber, with Orioles flitting past our window in the morning. It's nice to get away once in a while.

She Watches Him

Vera is keenly aware of her brother now. He's grown in size for one, and it's hard to ignore the chatterbox.

He's grown quite fond of her as well. He'll sing her her favourite songs when she fusses. And can push her in the pram quite well now.

I ask him to hug Vera, and he does so with his 'dinosaur claws'.

Me and My Daddy

Ian is a family man. He rushes home after work to the kids. He doesn't smoke, doesn't drink, doesn't shop, and has no need like me to "have a holiday". Being with the kids is enough for him.

Christmas Fun

Musical toys always work for Vera - mummy buys her something to train her finger holding.

We bring my Grandma over to enjoy time with Vera.

December School Holidays 2013

The school holidays started in mid-November for Vera and Daen. 

We put her in the stander for the first two weeks of the holidays. 

Daen thinks this is a train.

Then she fell sick and the whole month of December she was unwell. 

First came a week of stomach flu with Diarrhea, followed by a viral infection for two weeks, triggered by her 2nd dental checkup. The dentist brushed her teeth, while she was lying face up. She possibly swallowed some dislodged plaque. This is not new to us. The same thing happened after her first dental visit 3 years ago.

Then a strange tummy crunching, arching and pain started that has lasted till now. 

We hope to see the doctor in 2 days' time for some answers. It could likely be that her reflux is back - we had stopped medication in March 2013. 

Vera's Room

She's coming to 6, and will soon need a longer bed,
perhaps one with remote adjustable heights and angles like in the hospital. 

Daen climbs into his Sister's bed for fun.

Her BiPAP stuff are in a trolley tied to the bed, so it will never topple.
Daen calls it "chea chea's vacuum cleaner". 

There's lots of stuff to keep organised.

Top shelf: Suction machine, music player for Vera
Table top: Hair dryer for drying her mask, diapers, clothes, medical supplies, and washing up basin.

Prone Princess

Stretchable cotton tube to cover Button from rubbing when prone 

Tube makes her look slimmer too!

Ever since Chubby got into kicking while prone, she's slimmed down a little. All that movement is so good for her. She can kick quite vigorously, so we put a tube over the button to reduce rubbing.

Prone time has increased too. She can stay like this for about 10 minutes. How far we have come.  
       

Her Ballet Flats

Feet Support for standing

 It's been almost a year since Vera's last Orthotic appointment. The pediatric orthotist was happy that the straps were well-worn and fraying, suggesting frequent use. She fixed new straps and also some toe wedges which prevent crimping.

The school holidays are when I sort out all of Vera's medical issues - free from the hectic schedule of bringing her to school.

End of November, she'll soon have her 3rd sleep study. Kids normally do one once a year, for Vera, it's been a year and a half already.

Start of December, she'll also go for her second dental check up ever. Yup, she's turning 6 and has only been to the dentist once. Teeth are terribly plagued with plaque.

Fingers crossed she stays well for all the procedures.

Same Size

Vera is coming to 6, Daen is coming to 4. Two years apart, but they are the same length.

After this point, Daen will surpass his sister and physically become "bigger" brother.

I hope one day he will treasure this picture of how they were like twins once.

D-I-Y Button Change

I finally get down to changing Vera's leaky Mickey button. It is a simple exercise, and I attempted to do it and take pictures at the same time. 

Step 1: Draw out the water from the balloon to deflate it.

Step 2: Gently ease old button out of tummy hole.

Step 3: Insert new button and pump up balloon with new water.

What a cool invention.

Flat Out For 2 Weeks

Our caregiver leaves a note for Vera.

Every 2 years, caregivers get home leave of 15 days.

Each time it comes around, I brace myself for two weeks of sleeplessness.

Because I would have to sleep with Vera, and her Bi-pap machine.

I would stay up for as long as I can hear it heaving in and out with her every breath, until the rhythmic muffled whistling lulls me finally to sleep for a few short hours. Each time she stirs, the rhythm is disrupted and I awaken. If she shifts and her masks leaks, the hissing sound of escaping air makes me jump out of bed. Yes. I am that light a sleeper.

So when our caregiver left for her well-deserved break, I asked Ian to sleep with Vera instead. Problem is, Ian is a sound sleeper - so if her mask had a leak and the alarm sounds, it is likely he won't hear it. But I took the risk. I needed to sleep well to look after Vera and Daen in the day.

On Day Two, Ian catches a cold from sleeping in the air con room with Vera. (We've tried, but the girl just won't sleep well without the cool comfort.) Usually, he's well in a couple of days. This time, he takes a week to feel a little better.

That one week, I slept (I mean, didn't) with Vera, and in the day felt the weight of her 14kg frame on my not-quite-so-youthful body. At one point, I was on the brink of falling sick myself. My all-time fear, is that if I had to care for Vera, she'd catch the bug and then, we'd seriously not be able to manage on our own.

We scraped by, grateful for the help from my mum, who came daily with lunch and cook our dinner.

In a family with a high-need special child requiring machine aids, an adult/kid ratio of 2:2 leaves no room for sickness. 3:2 is almost a necessity for sanity.

16 days later, Beth returns as her note promised. My body gave out and I fell sick the very next day.

While I'd like to think that I am still young, my stamina and energy has clearly drop over the years. The next time round, I am definitely getting a home nurse to tide us over.

Big Boy, Big Girl

Asking Daen how he protects Vera

All too soon, the kids have grown up. Though skinnier than his sister, Daen at 3+ has surpassed Vera in height. Vera remains the heavyweight, and has steadily put on the pounds.

Daen the teddy and Vera the piggy are in a "cave" together
 - we constantly instill in him the need to protect his sister. 

Taking his first strides on a pedal-less bike.

 While Daen finds his feet on a bicycle, Vera is making great progress in the pool. When we first started her in the pool at a year old, she lasted barely 15 minutes. Today, she can stay almost an hour and is still kicking after we've taken her out of the pool. Teacher JJ has been so great with her this year, and with Vera being much more engaged now, we are all enjoying school sessions, particularly hydrotherapy. Here's to more good times ahead!

"I'm lovin' it!"

Leona is ONE

Today we share the joy of another Trisomy 18 family reaching the Big One with their daughter Leona.

For Trisomy 18 parents, this milestone is extra meaningful simply because the medical literature tells us that 90% do not make it to their first birthday. So in our hearts, it is as if our T18 kids who do, have just graduated in the top 10 percentile.

The little lioness Leona is ONE!!!

Living a miracle these two!

A wonderful surprise, Leona's paed who is also Vera's ex-paed
drops by to share the joy. We love doctors who love our children!

School Workout

More standing time, to get Vera used to bearing weight on her feet.

It's the second half of 2013 already and Vera is back into the swing of things at school.

PT prescribes more weight bearing on her feet and hands.

Supporting her from behind and shift weight from one foot to the other.

Lots of resistance from the girl on this one!

Also curling her inwards to stretch out her spine, as she is always arching backwards.

Getting her to kick one foot at a time.

Unlike in 2012, where she frequently complained during PT sessions, she's been pliant and cooperative this year. She seems to try hard to do what's required. I think her core strength has helped in this respect. We are all very happy and proud of the progress she is making.