20 January 2017

The High Cost of Special Needs Equipment Our Kids Need

As a special needs parent, one major bugbear we have is the cost of special needs equipment. They are extremely expensive.

Why? 

Answer: They are made in the US. And in the US, special needs equipment are covered by government insurance. So no direct out of pocket from consumers, hence no direct incentive for manufacturers to lower their cost. 

And our kids need them. Bath chairs, remote control chairs to give a sense of independence and freedom, gait trainers to teach children to walk, and of course pushable wheelchairs. 

Bath chair for safe bathing

Remote control wheelchair
Gait Trainers that help kids learn to walk
The good folks at Paediatric Seating Solutions Sam and Jimmy (above) help kids find suitable equipment.
For many special needs parents like myself, these are the "luxury goods" we own, in place of luxury bags or shoes.

Here are Vera's necessary items - more expensive than any piece of furniture in our home. 

Rifton Activity Chair approx $5000


Rifton Feeding cum Activity Chair that allows tilting forward and backward with side supports for her Scoliosis and for easy moving around the house. Without this chair she would basically lie in bed the whole day or on the floor.

Zippie TS Wheelchair
Zippie TS Wheelchair for going out to school 5 days a week. Also allows tilting and with support for Scoliosis. High enough so we don't have to bend so low (backache) to lift Vera out. This was a gift from Make-A-Wish which we really appreciated.

14 January 2017

Vera Can Go Places Now

Make-A-Wish threw a balloon-filled Wish Party for Vera and our friends and family.
On 7 January this year, Vera got a new wheelchair from Make-A-Wish.

They grant the wishes of children who are chronically sick.

Each child can have one wish granted. Since Vera cannot tell us what she wishes for, we as her parents get to decide for her.

It was a simple decision.

As an immobile child, the only way Vera can see the world is for someone to push her around or sit in a vehicle.

Vera had outgrown the stroller she had been using since she was 3 years old. She was way overdue for a new one. But because of her Scoliosis - her spine is an S-curve, she needed a wheelchair that could provide customised support so her Scoliosis would not worsen. With such a wheelchair, she could sit for hours in school well-supported.

On the day of the reveal, wish granters surprised us with a chair decked up in a rainbow of colours.


The theme: nursery rhymes "The Wheels On the Bus", "Baa Baa Black Sheep" "Humpty Dumpty". Humpty's expression sums it up "Why are you sleeping at your own party Vera???"

Her day-night reversal meant that she wasn't awake throughout the party.


It was a shame. There were fun and games, a cake, and pretty decor. The last time we had something like this for Vera was at her 5th birthday.



It was great to have our family and friends with us at the party to share the joyful moment. The last we had gathered was under sombre circumstances at the hospital last April.

Thank you Sam, Jimmy from Paediatric Seating Solutions and Auntie L for the hard work behind the scenes getting the wheelchair fitted just right for her. Thank you Make-A-Wish for the gift. Vera can go places now.

25 December 2016

A Christmas to Cherish

The best gift this Christmas - Vera and Old Mama still here.

10 December 2016

Two Is Better Than One


We started 2016 with zero need to suction Vera.

We end 2016 with daily suctioning, 2-3 times a day.

This is our new normal, our new 'well' situation.

Weakened lungs and weaker swallowing ability mean more secretions.

Daddy holds her because she struggles, while mummy suctions. If I had to do it alone, I would have to use my feet as Daddy's hands. Possible, but not easy.

Two is better than one.

23 November 2016

Respite Admission


Flu bug. Got Daen. Got Vera. Got me. 

That was 2 weeks ago. We were back to 3 hourly suctioning. Even as I was down, we held out at home for as long as we could. 

We were struggling to keep her oxygen requirements above 90%. We had no nebuliser, no oxygen concentrator, no oximeter. 

We have been resistant to turning Vera's room into a hospital set up, but it seemed inevitable. 

Fellow mummy Samantha was a fairy godmother. In a flash, we borrowed a nebuliser and an oximeter from her. 

I lasted 8 days. On Day 9, my body refused to move and I just lay in bed. 

It was time for respite admission. Luckily there was a bed. 

I do not see it as a weakness that I have failed to take care of Vera at home throughout. I do not feel guilty. 

I think no mum dealing with a child with high medical support needs should feel that they should shoulder all the burden of their sick child. Especially if they still had to work.

I'm glad we're a phone call away from our NUH Homecare nurse, who arranged everything. I could get proper rest (finally!) while knowing she's in good hands. 

I knew that a flu cycle is at least 14 days for Vera and that she was already on the mend when she was admitted. 

We should be bringing her home soon. 

12 November 2016

Eye See You


Miss Squinty-small-eyes has new big eyes. All thanks to her new pair of glasses. 

They magnify her eyes big time, because the degree is very high.

After 3 rounds of detailed eye tests, doctors discovered that Vera has severe long-sightedness. Without "lao hua yan" glasses, she's as good as blind. 

No wonder she kept poking her eye - to stimulate her own vision. No wonder she wasn't tracking us. At 700 degrees, everything is a blur.

The eye tests also confirmed, for the first time in 8 years, that the physical connection between her both eyes and brain are normal.

It doesn't not mean however than with these glasses she can suddenly see perfectly. 

Doctors believe there was some brain damage during the serious Pneumonia earlier this year. This could have affected the processing of visual input. 

For now, we can see that she's getting used to "seeing" again, with new eyes. 

19 October 2016

Coming To The Surface


I am rising from my deep dive.

I can feel it.

I've been reading to help myself.

Author Jody Day says in her book "Living the Life Unexpected":

"Being depressed is not necessarily always a problem; it has a valuable part to play in giving us the rest and space we need to reconstruct our identity after losing someone or something very dear to us."

"We reject those who try to cheer us up...we are in a deeper place than that, and we know that's where we need to be."

"The depression that is a part of grief will pass when it has given you the space, rest and introspection you need to move forward with your healing journey."

"Once we begin our grief work, things can begin to shift quite quickly, and you can start moving forward with life again."

"Acceptance is about coming to terms with our destiny and making peace with it. It doesn't mean we like it, or that we think it's fair. It just is what it is."

"Acceptance does not mean that we go quietly. But what it does mean is that the energy that was locked up in our grief becomes available to us again, to dedicate towards a new future."

I took a picture with Vera today. I haven't done so in ages. It's a good sign.

As long as Vera doesn't give up hope, I can't.


30 September 2016

Stemming The Downward Spiral

The last 2 months have been rough. Not for Vera, but for me.

It became increasingly clear that she had lost vision and it would now be her new normal.

I was heartbroken.

Since Day One, I'd mentally prepare myself for all kinds of deterioration - lungs, limbs, but never that she would lose the little sight she had left in one eye. She no longer focuses on faces like she did before. We are quite sure she can't see us now, or we're probably blurry shapes.

I was falling apart. I did not feel like doing anything. I'd burst into tears, sitting in the park. Sorry not for myself, but Sorry that this determined little girl would have to start all over. With less faculties.

I reached a point where I would zone out to cope. I stopped caring about Vera, focusing on Daen instead. The little buzzy was what kept me going. I knew I had to stop myself from spirally downwards further.

Ian, dependable as always, stepped in to love and care for Vera when I zoned out.

Then Vera started to improve in her strength. We are seeing her stroke-like hand respond slightly to our daily physiotherapy. She even started to attempt to do her signature crunches!

But the biggest glimmer of hope, was that she still wanted to pull us in for a hug - this time with just one movable arm.

And she actually seems to be in good spirits, despite all that has happened to her body.

How many of us can do the same? As it turns out, her condition, her "unknowing", is her greatest blessing.

How can I give up when Vera is so determined to go on?

And at this bottom of the U curve, her teachers, therapists, doctors and nurses, and friends are there for us. Coming to visit, especially the super- caring Dr W and Nurse E from Nuh Homecare team. I am so grateful.

Like our friend Kenneth says, she's "reset to zero", something our medically fragile kids are prone to.

I've also had to "reset to zero". Perhaps that's what we all need some time in our lives to take stock, to recharge and reflect.

I'm taking it by the day now.

Vera will get better. And so will I.

28 July 2016

Smiling A Little


Amidst her drowsy state most of the day, we're beginning to see her smile return like brief sun rays through the clouds.

I'm just so glad to see her smile again.

27 July 2016

What Am I?

Someone recently asked me, "How I find the strength to go on? How faith helps me, was I an Atheist."

I'd better find out, I thought.

I googled Atheist: someone who does not believe in the presence of a God. Nope.

Free thinker seemed too broad and unfocused and Humanist seemed too focused on humans.

Then I found this other term; Agnostic (why does it sound like "caustic")

Agnostic: a person who holds the view that any ultimate reality (as God) is unknown and probably unknowablebroadly :  one who is not committed to believing in either the existence or the nonexistence of God or a god

I guess, at least for me, that comes closest to my belief.

Since I do not follow any religion, where do I get the strength to go on for Vera?

I don't know, but these words from philosopher Krishnamurti, though rather deep, ring a bell for me.

J. Krishnamurti, “A New Consciousness” from This Light in Oneself—True Meditation

“One has to be a light to oneself; this light is the law. There is no other law. All the other laws are made by thought and so are fragmentary and contradictory. To be a light to oneself is not to follow the light of another, however reasonable, logical, historical, and however convincing.
You cannot be a light to yourself if you are in the dark shadows of authority, of dogma, of conclusion. Morality is not put together by thought; it is not the outcome of environmental pressure, it is not of yesterday, of tradition.
Freedom is to be a light to oneself; then it not an abstraction, a thing conjured up by thought. Actual freedom is freedom from dependency, attachment, from the craving for experience. Freedom from the very structure of thought is to be a light to oneself. In this light, all action takes place and thus it is never contradictory. Contradiction exists only when the light is separate from the action.
The “ideal,” the “principle,” is the barren movement of thought, and it cannot coexist with this light; one denies the other. Where the observer is, this light, this love, is not. The structure of the observer is put together by thought, which is never new, never free. There is no “how,” no system, no practice. There is only the seeing that is the doing. You have to see, not through the eyes of another. This light, this law, is neither yours nor that of another. There is only light. This is love."

Leona is Four


In the world of Trisomy 18, parents lose their babies in utero, give birth to them stillborn, or lose them days or weeks after birth.

In Trisomy 18 terms, a child who makes it past her first year is a survivor.
Leona has just turned four.

To see that she made it past the initial years and is now thriving (you should see her lotus-root limbs), it's an awesome feeling.

To experience her grabbing fingers, joyful grins and pure gaze is a privilege.

The spirit is strong with this one.

Thrive on, little Lioness!

21 July 2016

Wading In The Well

Wading in the well.

That's what I've been doing the last 2 months.

It's quiet, dark and damp.

I wade in endless circles, looking up at the sun that's so near yet so far.

We can't get Vera out of her stuporous state.

The medication for her seizures, they knock her out. She wants to wake, but can't.

Our worst fear is that Vera can't seem to focus. She doesn't look at us now, even up close. We suspect her sight has been affected.

When we call her, she no longer turns towards us. (Is her hearing affected as well?)

Yet, the girl shows signs of life. Her left hand moves with a vengeance - swiping, scratching, it's very much alive. Fighting like a one-arm bandit.

Vera, fight on. We gotta get out of this well.

12 July 2016

Nightmares

I had a nightmare about Vera. I was on a motorbike. I rounded a corner and saw her in her pink top and grey shorts faced down on top of another child on the tarmac.

An accident.

Instead of going to her, I swerved away.

05 July 2016

Suctioning Seriously Sucks





Warning: This is a ranting post.

I'd never thought I'd rant in a post, but here it is.

Suctioning your own kid sucks.

Sticking a tube down your kid's throat, agitating her to gag and cough sucks. Best part, she resists with all her might and we can't get the secretions out.

Seeing tears from her eyes each session, with no crying sounds, and you're the one causing it. My tears? They drip from my heart.

I'd not expected to suction her for so long after discharge. Discharge right? Well already that's why discharge right?

Wrong.

Full recovery of lungs, will take months. Secretions will therefore take months to clear. I'd been eager to discharge her. In all her past admissions, the need for suctioning at home stopped after a week back home. Things go back to normal.

It's a nightmare this time. It's been 5 weeks I've done this.

For Vera, it's been suctioning every day since mid-March, that's 4 months. For a girl who's never needed suctioning at all when well.

I just want this suctioning nightmare to end.

30 June 2016

At My Lowest Point

2 weeks ago I hit rock bottom.

Suctioning frequency increased, requiring waking up in the middle of the night every night. This is coming home following 2 intense months of near-death hospital drama.

It reached a point I wanted to send Vera away - back to the hospital. "No coming home until suctioning zero and back to normal sleep hours." I thought to myself. (I had started suctioning in March. It is June and I am still suctioning.)

The only problem was, sending her back to hospital would just expose her to infection again.

Here I am, stuck in a situation I can't change that's wreaking havoc on all of us.

Even Daen has wised up. He came into the room once and saw me tending to his sister and said, "Oh, not available" and walked away.

In the good times of the past, we had much more time together.

He's used to the busyness of suctioning Vera in the morning by now. As a result, he readies himself for school with less prodding - less attention, more independent.

Vera's still not back to normal hours. Until she does, our lives can't really go back to normal.

09 June 2016

US Time Girl


Vera came back from hospital on US time zone. The no-day-no-night of hospital wards altered her circadian rhythm. When we wake up at 8am she'll fall asleep. She'll wake at 6pm.

We took turns to stay up with her through the night and it was terrible for us.

I refuse to follow her time. She's got to follow us instead. Now I just let her be at night while we sleep. I wake occasionally to check. And yes, we've resorted to help from sedatives.

I'm banking on Mr Sun to work his magic, so working in as much sun time as possible.

Vera's lost all her usual movements except for one arm. But I can't dwell on that right now. Gotta get her back to Singapore time first.

Suctioning is still on going with no end in sight. I'm hoping Mr Sun will dry up her lungs too.

19 May 2016

The Spider's Web Undone

Right now I feel just like a spider. A spider that has spent so much effort artfully weaving its fine, intricate web, only to have the rain come and destroy the whole web.

Vera has lost so much of what she could do before this illness.

She's basically like a baby again. All the YEARS of effort - from her many teachers, ourselves and most of all Vera herself - gone down the drain after the hurricane came and went.

Yes yes, well meaning friends tell me she'll get better and be back to her normal self. Who really knows? I don't. All I know now is the PAIN of seeing Vera lose so much function. The HEARTACHE of no more scooting around, head control, sitting by herself, infectious smiles and generous hugs.

Yes yes she's out of danger, we're lucky she's still with us...but now's the time I'm really reeling from the aftermath. I MISS THE OLD VERA SO MUCH. And I need the space and time to get used to the new Vera.

Of course I'm going to try my best to help her regain whatever she used to have.

But right now, I wish I had the spider's non-human ability to just build its web over and over again each time it's destroyed, as if that were what it was born to do.

18 May 2016

Mummy Falls Sick

And as so many times in the past, I fall sick once Vera is back home from the hospital.

Well, this is the 4th time I'm sick since she fell sick. My body just can't take the stress.

Caring for a sick child is hard when your sick yourself. Waking up in the night to do suctioning, is becoming harder as the years go by.

Hopefully things will become more manageable when I recover.

15 May 2016

Day 2 Back Home

Vera was discharged from the hospital on Friday.

We had been there 4 weeks in PICU, 3 weeks in High Dependency.

While we are so relieved the daily hospital visits have ended, the journey to full recovery has just begun.

Her caregiver and I have to continue suctioning round the clock, as the secretions will not be completely gone for a while.

Vera's different than before. If you've seen how active she is, the change is evident.

As of Day 2:

Head control: poor
L hand: moving slightly like before
R hand: not moving much
L leg: slightly moving
R leg: not moving much
Sitting up: no
Signature smile: no
Remarks: grimacing at times

I've been on unpaid leave - thanks to my very kind boss - since Vera was hospitalised.

While I wish she could bounce back to her normal self and life can resume as normal, it's not going happen.

She shows signs that she's trying, so hopefully with time she can regain whatever function she used to have.

29 April 2016

Difficult Decisions

Over the past month, Ian and I have had to make some of the toughest decisions as parents.

1. Deciding whether to intubate Vera

When Vera worsened and struggled to breathe, we were suddenly under pressure to decide very quickly if we wanted to intubate her. We knew intubation would be painful (having a tube down your throat all the time, and she'd have to be heavily sedated and on strong painkillers). Seeing her struggle to breathe, our gut feel was to go ahead, and for sure, it was the right decision.

2. Deciding whether to "upgrade" to more powerful Oscillator

When she was intubated and put on the Ventilator, the settings kept increasing to support her. Question was, if we'd reach the max of Ventilator capacity, do we upgrade to the Oscillator? After learning that they would need to paralyse her body in order to put her on the Oscillator, we decided not to.

3. Deciding what to do if she de-sats again

At the maximum settings of the Ventilator, Vera had two episodes where she struggled to keep her oxygen up. Each time, she had to be bagged several rounds to bring her back up. Those were her darkest days. We were asked what we wanted to do if she should de-saturate again and could not be brought back up. Doctors and ourselves were primed for it to happen a third time, but Vera spared us from that agony.

4. Deciding whether to re-intubate her

As the time came to extubate Vera, we were told that there was a possibility that she may struggle to breathe on her own without the tube. In such a case, putting it back in was an option. Re-intubation meant another few weeks of sedation, and subsequent extubation success was also not guaranteed. At such a point, surgery to insert a trach at her throat may have to be the ensuing course of action. We did not want Vera to go from a life of no suctioning when well to suctioning regularly round the clock. We decided against re-intubation.

It meant the stakes were high. She HAD to breathe on her own when off the Ventilator. To give her the best chance, together with the doctors, we tried to prolong the period she was on the Ventilator, to give her enough time to prepare. The trade-off? Very bad withdrawal symptoms later on for being on the sedatives for so much longer.

Going through this life-threatening episode has been a great learning experience for us.

We've experienced first-hand the kinds of treatment and equipment used in life-saving.

It gives us much food for thought: If it were us, how far would we go to save ourselves? If we were so knocked out and can't communicate, would we agree with whatever was done to us? How would we tell our loved ones, that we want to keep fighting or when enough is enough?