Standing Frame for Vera

This is how we used to practise standing with Vera.

Now Robocop Girl is here. Thanks to my mum for sponsoring this standing frame to help Vera stand tall!

Daddy helps put her in.

Music to help her stand for longer.

2015 Give Me A Break!

We're almost at the half year mark, and still have not settled into some much needed routine.

January - 3 weeks of lung infection and non stop suctioning, followed by hospitalisation, then came a fall and re-hospitalisation.

February - Chinese doc visits to cure Daen of his protracted cough. Chinese New Year.

March - Appointments galore: ENT, Sleep Study, Neuro, Speech Therapy, Physiotherapy, Orthotics new Afos.

April - Lee Kuan Yew passes away. Send old helper back. Train new helper. I lost 3 kilogrammes.

May - Vera Gastroenteritis 2 weeks, followed by Daen Gastroenteritis. Both lost weight.

I have been trying so hard to get Vera settled into school but my efforts get thwarted over and over again with all that has been happening since the start of the year.

All these while I attempt to still deliver at my job.

Which was why this Monday, I lost it.

It was a fine sunny day, and I had just gotten Vera ready to enter the pool at school. We'd missed so many hydrotherapy sessions, the most enjoyable part of school for Vera.

Then, there was a lightning alert. We were not allowed to enter the pool.

I stormed to the office. There must be a mistake...it's sunny blue skies!!!

They told me it was activated by the met station.

I called a nearby pool, intent on finding an alternative place, but it was under maintenance.

At that point I felt really disappointed and upset.

Months of emotional strain got to me.

And now the stinger: The pain in Daen's ankle joint is back.

Just thinking about another whole cycle of injections fills me with dread.

Why does life as a parent have to be so hard?

Water Girl

It has been a long time since Vera had gone into the pool at school. 

Hydrotherapy is once a week, but due her many bouts of illnesses, we have had to stay away from school. 

Yesterday was the second time this year. 

And boy, was she happy to be in the water again. 

Besides the regular duck pedaling that she does, she's now added in vigorous upper body movements. Just this simple improvement brings me such joy. 

In the water, she comes alive, free of the weight of her limbs.

If Vera could tell us, what would she wish for? I'd reckon to swim every day, to be in her element. 

Bath Chair Base Solution

We've been bathing Vera in this Canetons Bath Chair for years. 

She's really outgrown it, so we've had to look for another bath solution.

Limitations:
1) Our shower area is really cramped.
2) We are looking at a basic special needs bath chair, knowing how costly they are.
3) We have limited space in the bathroom to store it.

We settled on the medium Otter Bath Chair at S$450 from DNR. There is still room for height growth, and the tilting allows us to wash Vera properly.

Next, we needed a base for it to sit on, so we can stand and bathe Vera.

The problem was, the accompanying Shower Stand base was too broad, and could not fit into our shower area. It was also extremely heavy and costly at S$350. Just for the stand.

We had to find another solution for the base.

I got excited when I googled and found another narrower version of the base for the Otter, available in Australia. It would fit our shower perfectly.

But when the quote came back, our jaws dropped: S$995. For a base.

That's when Daddy stepped in to work his magic.

He figured some sort of A frame would suffice. We could custom make it, but then he found this selling in Singapore:

A lightweight, foldable made-in-Japan frame designed to take a man's standing weight. It could lock in place and seemed stable enough. Price of the base: An affordable S$62

The next question was how to secure the bath chair to the base.

Daddy bought two L brackets and riveted them to the base. They would hold the chair bars.

Then he used stretchable hooks to anchor the chair to the base.

Voila! Vera's new bath solution:

The best part: Everything folds neatly under our sink, with space to spare.

Hooray for our handyman!

Sleep Study Results

I have lost count how many sleep studies Vera has gone through.

I don't stay overnight with her. So far, it's been her caregiver.

I can't bear to see her with all the probes and wires. I lose my cool with the person attaching them.

A sleep study is a misnomer - how to sleep at all with all that stuff sticking to your entire body?

We do it because we need to know what the optimum pressure setting is to support Vera's breathing when she sleeps.

Her settings have gone up slightly, from 15/7 to 17/7.

Her Respi doc says since she has grown a fair bit, this is expected to support her added weight.

School is Cool

Not a moment of boredom in school.

Now that Vera is in the Primary One of special needs education, the curriculum is packed with activity.

I made the choice to work part-time just so that I can bring Vera to school. 

Of course there is a financial sacrifice, but these precious moments, to be there to capture them, are priceless.

Poking Her Nose

Vera has started to poke her nostrils with a vengeance.

It's so persistent that sores are appearing.

We don't know what to do except splint her.

We can't be hugging or playing with her all the time to prevent it.

Vera's Checklist

Checklist of a regular 7-year-old child:

Things to do in 2015
1. Chinese Enrichment
2. Swimming lesson
3. Art class
4. Piano lessons

Checklist of a 7-year-old child with multiple disabilities:

Things to do in 2015
1. Eyes - Detailed eye exam under General Anaesthesia (June)
2. Ears - Detailed ear exam (ABR), get fitted for Hearing Aid, drainage of middle ear fluid under General Anaesthesia (June)
3. Mouth - Begin Oral Tasting seriously and not in an adhoc manner (in progress)
4. Lungs - Get annual overnight Sleep Study done and adjust settings for optimal breathing support (done)
5. Feet - Get new pair of AFOs made (done)
6. Equipment - Get one size up Bath Chair (and figure out how to custom build a base that can fit into your shower area). (in progress)

These are the things Ian and I busy ourselves about.

So what about Daen?

Chinese Enrichment, Swimming lesson, Art class, Piano lessons are all the things I would like to give him, but as of now he is getting none of them. I can't keep it up, even if he can.

A Rare Gem

At Rare Disease Day 2015 - The disorder may be rare, but the love isn't.

We attended Rare Disease Day for the first time this year, an event organised by Rare Disorders Society Singapore. 

Through the Society, the struggles of families with children living with rare disorders have been receiving more attention and acknowledgement. 

Despite their extreme physical and mental disabilities - our special children play an important role - in reminding us that our purpose here on Earth is not to strive for more money or more fame, but to care for the frail and fragile amongst us.

Thank You, Mr Lee Kuan Yew

It has been a hard week for Singapore. Mr Lee Kuan Yew, the man who brought Singapore up, passed on at age 91 on 23 March, 2015.

Singaporeans mourned as a nation, because in our individual hearts, we know so much of who we are today, where we live, how we live, the environment we have, were influenced by this one man's vision. 

While I am saddened, I am glad that Daen got to experience this national event, and is at an age where he would likely retain a memory of it.

Although he never shed a tear, in his picture he is crying, and so are Mummy and Daddy. 

Incidentally, one of the stars is on the other side of the moon.  

Penning down one of his messages at one of the Community Tribute Sites. 

(He is referring to the Singapore River)

Posting up his message

He is a sensitive boy. 

Bedok Jetty

Precious moments together.

Hearing Test Results

After 7 years of leaving it be, we finally got Vera properly tested for her hearing. 

Here are the results:

What this means is 

1) She can hear, but not very well.

2) Her right ear is better than her left ear. 

Should we fix her with hearing aids, that's the question. Knowing that she'd probably pull them off in 30 seconds.

The more worrying thing is that there is some fluid in her better right ear (middle ear problem).

Anyone has dealt with that before? 

Vera is 7

Vera has turned Seven. We had a small family gathering after all the big celebrations during the Chinese New Year.

This year, Daen gets into the swing of the preparation with vigour. 

Early start for Daen to go and get flowers for Vera. 

He decided on the gifts that he was going to get her - "one orchid and one tulip" and the card that he was going to make. (He ends up drawing three.)

He takes his role as host very seriously - getting guests to make wishing cards, starting the keyboard accompaniment for the birthday song, and finally helping Vera to cut the cake. 

When I told him it was the role of the birthday child to give out the cake to the guests (not to cut the cake which he adamantly wanted to) he said, "But Chea Chea can't walk" so he promptly went about giving out the cake. 

Everytime I see Daen caring for Vera, at this young age, I know I'm looking at something so pure and beautiful that nothing in this world can replace. 

Getting into art and craft mode for the deco

Cousins to help blow the candles

Old mama (my grandma) makes her smile

With Gong Gong

Lunar New Year 2015

Vera recovered in time for this year's celebration and she turns 7 during this Lunar New Year period so look out for the next post!

Vera wishing all Best of Health & a Happy for Lunar New Year!

Home Cheer

Finally got down to open Christmas presents. This one from Home Cheer was very meaningful – a set of scrapbooking stuff to make a book of beautiful memories with Vera. It was a good reminder to me that while we busy with the everyday, we need to take time to document our moments. Now to find time to sit down and piece it together!

Windy Day at the Beach

Vera has recovered and we could finally bring her outdoors. We bought a whole chicken, whipped some potato and boiled some broccoli and headed to Pasir Ris beach. 

This was the spot Ian proposed to me 10 years' ago. Today, we return with 2 kids in tow. 

December to January is continuously windy at this beach. You have to hold down your cups and plates. It was a refreshing change from our hospital "rounds" the week before. 

Vera is well, and life is good again.

Getting Better

15 days after the chest infection started, it seems she is on the mend. No more crying although the eye bags are still evident.

We hope to be home tomorrow.

In Deep Slumber

Maybe it's the hospital air. Or the hospital bed. Or the thick blanket or aircon.

The extremely exhausted girl finally gets the sleep she needs to recover. She's slept for a straight 15 hours already.

Hopefully sleep will work it's magic.

I am again reminded how easily she can catch a bug. We just went to school for one day and she was next to another child who was coughing away.

Parents, please keep sick children out of school - spread to classmates, spread to teacher.

Also teachers good practice to sanitise hands after touching kids who are unwell. Or place them away from other kids.

Sigh. December Infection. January Infection. February...

Still Not Well

Vera fell sick on 9 Jan. That was 10 days ago. She is still not well. In fact, she so clogged up secretions the past few days that she could hardly get any sleep. She has been crying once we put on the mask, because the air pushes the secretions back in doesn't help.

Seeing her crying stresses me out. Because the happy girl hardly cries.

She usually takes 2-3 weeks to get well from a bout of flu. We still don't know which way this one is gonna go. Part of the reason is because I made the call to hold off antibiotics. She gets very bad diarrhoea from oral antibiotics and that's something I don't wanna deal with. It basically clears her gut out.

If her fever comes back with a vengeance, we may consider going to hospital for IV antibiotics. That doesn't give her diarrhoea cos it goes straight into the bloodstream.

New Year, Nasty Bug

Barely a week into the new year and Vera is down with a bad chest infection.

She went to school for a day, and was down the next day.

The chest infection in December was mild, and she got through it in 2 weeks.

This one however came fast and furious, with thick green gunk flowing freely on the first day, accompanied by a high fever.

Nurse from Starpals came, and we managed to get some Klacid for her. She can't be on Augmentin as that leads to very bad diarrhoea.

Alas, Klacid is also giving her very bad diarrhoea.

It is so bad that I doubt her gut can make it through another 6 days to finish the course.

I am stopping the Klacid. We will keep suctioning till it passes.

Fingers crossed she can fight this on her own. Else it will be admission to the hospital, set a plug for IV antibiotics, which won't cause diarrhoea.

Rise and Shine to 2015

Start of the new year.

If there was one great achievement, it would be in Vera's sleeping routine.

After years of having her sleeping at 2am and waking at 10am, we finally managed to shift it to saner hours.

She now sleeps about 1130 and wakes around 830.

In time to send Daen to school.

I can let her sunbathe in the park before going to work.

Let's hope morning Vera is here to stay!

Early Xmas Present

I couldn't wait till Christmas to give Vera her present.

Little Leona Goes For Surgery

This is Leona, another Singaporean baby born with full Trisomy 18.

She is now 2 plus.

From birth, she has shown the strongest of spirits, modeled after her very positive parents.

I believe these children can feel the life energy of those who want them to be here.

Leona has come out of a PEG surgery wonderfully, with easy intubation and extubation.

Now with a tummy feeding port, she can enjoy the freedom of having nothing through her nostril. I believe this would pave the way to greater improvement in feeding therapy, without any regurgitation.

I remember after Vera had this surgery, she became much more comfortable, and thus less cranky. Vomiting became a thing of the past.

It is as much a life improvement for the child as it is for the parents. Grow grow grow now, Leona!

Still Choking

It is 2 weeks since Vera fell sick.

She is getting better, but the year end cold weather is not helping to speed things up.

The choking continues, even in her sleep. Secretions, while still apparent, have subsided.

We hope for her to be well in the next two weeks.

Year End Illness 2014

And I was counting the days to December, whereby Vera would have broken her record of not being sick for 1 whole year.

Too bad, she is down with an URTI (upper respiratory tract infection), also known as a flu. There is fever, but low grade, which is a sign to me that it's not a serious one. If serious, the fever will spike to above 39 deg C in the first day. If we are lucky, this bout will clear in 2 weeks.

Her record so far:-

1-3 years old: 3 times fall sick per year, with hospitalisation.

4-5 years old: 2 times fall sick per year, sometimes manage at home with suctioning

6 years old: 1 time fall sick, so far managing at home

Well, at least the trend is positive so far!

I just hope she recovers in time for Christmas.

2014 Hearing Review

We brought Vera for her ENT appointment today.

The ENT doctor looked down her ear canals and remarked that lots of wax build up has occurred.

He believes that there is also fluid buildup in her inner ear. This can occur when the tube draining it is not functioning properly. Even if the fluid is surgically drained out, he suspects it will keep recurring. 

The two above reasons could affect the level of hearing in her good ear. We noticed that lately she has been digging her ears with her pointer finger, as if to clear some blockage.

The doc has ordered an ABR test in 2 weeks' time. Vera will have to be sedated with Chloral Hydrate for this test to be done. It will give us a definite answer as to what is happening in her good ear.

Our aim now is to preserve whatever hearing is in her good ear.

EIPIC Graduation 2014

Today Vera graduated from the EIPIC programme at Rainbow Centre. 

She has come a long way since the early days, she started early intervention at 1 year old. 

Back then, she hated swimming. 

Now, she loves the water. 

In the past, she'd stare perplexed at what we were trying to do in music therapy. 

Now, she totally enjoys music and participates so much more.

Over the years, she started to enjoy going to school. There's no longer any crankiness. 

She was blessed with teachers who really want her to experience the world. 

We are happy to be part of the loving community that is Rainbow Centre. It's a truly special place with special teachers!

Graduating Friends

Vera loves school and her friends. 

The only time she can freely touch them is when they are lying down.

With long-time friend Xing Ying

Xing Ying and her have been classmates since they were 1 year plus. How time has flown by.

They are now graduating from the EIPIC programme this year.

We will miss the EIPIC teachers, who are a really special breed - they are so dedicated in this work.

Next week, Vera will be having her graduation ceremony and we are performing an item as a class.

Stay tuned!