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.

Is It Seizures?

Some special needs moms I know watched the video of Vera in the previous post and said it looked like fits.

I've learnt to listen well to these moms.

So this morning (Saturday), I took Vera down to Emergency. It's been almost 2 weeks since the height of her so-called 'possessed' episode, and she's still not back to her usual happy self. Instead, she's drowsy, dazed, crying to be rocked to sleep, then repeatedly crying during her sleep. She's basically behaving like she's sick.

It's the weekend, and I wasn't going to risk an ambulance run should the 'episodes' strike again (we know how things like to happen during the weekend). I have had enough drama to last me for a good while.

My instincts said: "Check her in, get her monitored, ready to respond with meds should a seizure strike, and more likely a Neuro doc will address her issues sooner." It turned out to be the right move. There will be a senior Neuro doc in the ward tomorrow (Sunday), and we'll most likely get some clarity.

I will update more then.

Thanks everyone for your support.

Arthritis, Stitches & Spirits

Where to begin? 

So much has happened over the last 1 month. 

It started in early August with a suspected sprain on one of Daen's ankles. It was swollen. 

A pronounced bulge around his left ankle that is warm to the touch
and skin that's now brownish in colour.

We brought him to Chinese sinsehs. The swell remained. 

We brought him to A&E at a children's hospital. They took an X-ray and said that there was a hairline fracture. They put his foot in a bandage and told us that the swell would go away within a week of resting the foot. 

Rather happy to be staying at home and getting to watch
more TV than ever.

We were referred right away to the Rheumatology department (what the #%@? is Rheumatology) and within an hour Daen's ankles were ultrasound scanned and he was diagnosed with JIA: Juvenile Idiopathic Arthritis. 

On BOTH his ankles. 

What? My 2 year old boy has ARTHRITIS?

The doctor explained. It is an auto-immune disease whereby his body's immune system mistakenly attacks itself, mostly at the area between the joints, causing the surrounding tissue to become inflamed and therefore swell with water retention. 

The only other shock that equalled this was the day we learnt about Vera's diagnosis. 

Vera has a diagnosis, a life-theatening one. Okay, I can accept that. Now Daen too? 

So now I have 2 medically-challenging kids on my hands. When you're a seasoned traveller on this path you know what that means. More anxiety, more heartache, more waiting for improvement, more hospital visits, more medication to secretly administer, more side effects to deal with....the list goes on. 

After one month of mounting question marks as to why he has been limping has led to this.

Arthritis is categorised as such: 

Mild: In 4 joints or less. 

Serious: In 5 joints or more.

Severe: Whole body. 

The doctor put it this way, "If he's going to have arthritis, this is the best type to have,"

By that time, I was a wreck, and that did little to console me. 

It is now 3 weeks since that dramatic day.

Thomas the train set from his Godma help us to keep
him from moving for 24 hours after the steroid injection.

Daen has had a dose of anti-inflammatory steroids injected into both ankles under sedation. He has to be on anti-inflammatory drugs (Indocin) for the next 6 months at least. The swelling has subsided, but not fully. He doesn't limp now, but is still wobbly.

"My ankle is better, I don't need a bandage anymore" the boy declares happily.

Then 3 days after the injection, bam!

Just as I was slowly recovering my composure after the climax of the injection and subsequent 24-hour bedrest for the boy, he runs, trips, falls and cuts his head on a sharp corner. 

Ian picked the wailing boy up and blood smeared all over his T-shirt.

Blood coming out from the head provokes a different response as compared to blood coming out from say, your leg. 

Head = Brain. Blood = concussion. I went berserk. Stark mad. Even Vera falling off the bed didn't feel so crazy. There wasn't blood oozing out directly from her head. 

Holding an ice compress to Daen’s head, I dashed out the house with him in my arms as if I was the ambulance. Ian broke a few driving rules. 

When we reached the A&E, I was determined to cut the queue. I shouted, "This boy’s head is bleeding, please help!"

We got speeded up. 

The gash was pretty deep, needing 2 layers of stitching: 2 beneath, 4 on top. But it wasn't a concussion. His brain is okay. He's going to be okay, I repeated to myself.

The boy fell in and out of sleep, I kept talking to him, comforting him. When my mother ("Grandma is a nurse" the boy knows) arrived, I offloaded him and burst into tears. 

It's been a week since the fall, and the wound is healing well. Daen can point you to the ledge where he cut his head. 

You'd think the story ends here.

Well, here's the straw that broke the camel's back: 

At the exact same period that we went through Daen's injection and fall, Vera started behaving strangely. 

It started with very bad sleep. We had increased her biPAP pressure upon her doctor's recommendation, based on the sleep study findings. We had to progressively increase it from 13 to 16 (Inspiration rate). We upped it to 14. 

A few days of bad sleep progressed to 2 whole nights of no sleep at all. She would stay awake, crying because she was so tired but she just couldn't sleep. Instead, she would stare fixated at the same spot at the ceiling. Her breathing would quicken, her legs would tense up and her hands would jerk frequently.

It happened to be the peak of the Lunar 7th Month, otherwise known as the Hungry Ghosts Festival. Every year, Vera has had  bad sleep during this period in past years, but this time, her behaviour completely freaked us out.

When she refused to even let us carry her, or touch her hands, or look at us, we decided the best immediate course of action was to get her out of the house. We brought her to my grandma's place for the day. My aunt and grandma prayed for her. She finally slept in the car back home. 

We reduced her setting back to baseline. More family members came to pray for her the following day. I started to pray.

I think back now on how the events of the past month have just been beyond me. And it deepens my belief that there is a higher power orchestrating my life, our lives - Vera's and Daen's included. How their different diagnoses will pan out, is way out of my human hands. 

Encore!

Vera has perfected the art of clapping and she knows it.

In fact, she's so obsessed with her ability to clap continuously, she's been embarking on clapping marathons.

This video is 30 seconds, but she must have clapped for 5 minutes non-stop. As if she's giving an encore.

But if you ask me, she's the one that deserves an encore.

It is nearly 1am now and she is still persistently clapping. The things this little girl can do!

I Can Move It!

Years of massaging her clenched fists have paid off. A year or so ago, her hands started opening fully. Now, her index and thumb actively work to activate a simple toy like the above.

What does this tell us? That her brain is talking to her fingers. She can control them!

The dots are connecting. You can imagine how proud we are of how far she's come.

Sleep Study 2012

It's a been almost 2 years since Vera's last sleep study. I thought it'd be good to find out if her settings are okay for her. Or if they needed to be increases or could be reduced.

With wires, electrodes and uncomfortable bands strapped round her, it was no surprise that the little girl was a little traumatised by the episode.

She slept only at 4am through sheer tiredness. Her usual sleeping time is 1am.

She's back home now and back to her usual sleeping time. Will update with results in a month's time (yes, it's quite a wait!)

Couple Time Out

Thanks to some complimentary tickets lobang for Universal Studios Singapore, Ian and I decided to take a much needed mental break from the routine of kid care. We spent a day at Resorts World Sentosa while my mom helped out.

Sentosa is a 30 minutes' drive from our home, but just being away from the kids made it seem far, far away in a very good way.

We steeled ourselves for the heart-stopping roller coaster ride...which got Ian pretty nauseous after.

But he steeled himself for the AWESOME Transformers 3D ride anyway. Bravo!

Major Milestone: Interacting with Toys!

Just a year ago, she'd not react to toys placed in front of her.

Now she actively touches them. AND looks at them curiously!

Vera continues to surpass our expectations of what she is capable of achieving.

At the four and a half year mark, we actually can tell that she is intentionally communicating with us and actively interacting with her surroundings and people near her.

Best of all, Vera is able to behave affectionately.

Never in my wildest dreams have I expected that this Trisomy 18 girl would develop to a stage where she is able to intentionally and repeatedly pull my face towards hers using both her hands, smiling at the feel of my face touching hers.

Changing The Narrative

Parents of babies born with disabling anomalies report they enrich families

Monday, 23 July 2012 - 7:34am

By Helen Branswell THE CANADIAN PRESS

TORONTO — A new Canadian study drawing on the experiences of parents paints a dramatically different picture than that in medical literature of the short lives of infants born with the congenital anomalies Trisomy 13 and Trisomy 18.

Medical textbooks are grim and bleak about babies born with genetic codes considered “incompatible with life.” But the study says parents who have these children speak of the joy found in what is almost inevitably a short lifespan. These children, they say, can enrich a family rather than destroy it.

An ethicist who was not involved in the study says the findings point to a need to change the messages given to parents-to-be and new parents facing the reality of a baby with T13 or T18, as the conditions are called for short.

“This study should have us stop and think about what decisions, for which children, have been made on the basis of misinformation,” says Francoise Baylis, a professor of bioethics and philosophy at Dalhousie University in Halifax.

“The negative narrative needs to change. Parents’ experiential knowledge matters and should be available to expectant parents and new parents.”

The study, by ethicists and the mother of a child born with Trisomy 13, is published in this week’s issue of the journal Pediatrics.

Trisomy 13, which is also called Patau syndrome, is a genetic disorder in which a person has three copies — instead of the usual two — of genetic material from chromosome 13 in all the cells of their body. Trisomy 18, also known as Edwards syndrome, is a similar condition where the genetic abnormality relates to chromosome 18.

Both can lead to multiple malformations and health problems. Traditionally few children born with these conditions have survived beyond childhood; when they do, they suffer from severe medical and developmental problems.

Those realities have led the medical community to almost universally advise against offering anything but palliative or comfort care to babies born with T13 or T18. The assumption is their lives will be short — sometimes a matter of days or weeks — and pain-filled, and that it is best for all involved not to try to prolong their lives with invasive care.

In fact, prenatal genetic testing that shows a fetus is carrying T13 or T18 triggers sombre discussions about babies who are so profoundly disabled they break up marriages and ruin family finances. It’s acknowledged that many women choose to terminate these pregnancies. And of those women who don’t know of the diagnosis or choose to continue with the pregnancy despite it, many will either suffer a miscarriage or give birth to a stillborn infant.

Barbara Farlow, a Toronto area woman, gave birth to her daughter Annie in 2005. Annie, Farlow’s 10th child, was born with T13. Farlow says she and her husband were realistic about their daughter’s condition, but wanted to love and care for her for as long as she could survive.

“We didn’t want our daughter to live on life support or to suffer. But if she had a chance to live comfortably and be happy . . . then we were willing and able to care for her, despite her limitations,” says Farlow, who is also an author of this study.

Annie lived for 80 days. When an illness brought her back into hospital and she stopped breathing, the staff was slow to try to resuscitate her, despite her parents’ wishes. Later, Farlow and her husband discovered Annie’s medical file had a DNR — do not resuscitate — order on it, even though they hadn’t authorized it.

They attempted to sue, but eventually gave up the case. But Farlow’s belief that parents of these children may want more options than they are routinely being offered provoked her research partnership with Dr. Annie Janvier on the study.

Janvier is a neonatologist and clinical ethicist at Ste-Justine Hospital in Montreal.
She had raised questions about the care offered to these children at a medical meeting Farlow attended. Janvier suggested that perhaps doctors ought to consult parents before assuming these children’s lives don’t have meaning and before making policy decisions based on that assumption.

The study notes that the American Academy of Pediatrics Neonatal Resuscitation Program and the American Heart Association guidelines recommend against resuscitating children with these conditions.
After the meeting, Farlow approached Janvier to urge her to get the views of parents, pointing her to about 18 online communities. A research project was born.

Over 300 parents completed the survey the team drew up, reporting on the experiences of 272 children.
Most reported they’d been given a bleak picture of what their child’s life would be. And half of those whose child lived longer than three months acknowledged that looking after a disabled child was harder than they had anticipated.
But only three per cent reported that their marriages split up over the experience. Nearly all the parents described their T13 or T18 children as a happy child, and said they were able to communicate with them to understand their needs.
And virtually all the parents reported that the child had enriched their lives. In most families where there were other children, parents reported the T13 or T18 child had a positive effect on the siblings.

“What we predicted as doctors happening to all these families didn’t happen,” says Janvier, who admits the findings are receiving a lukewarm response in some quarters.

She wants parents-to-be and new parents to be given a fuller picture of the experience with a T13 or T18 child. She knows many will still choose to terminate such a pregnancy or opt for comfort care only if they do give birth.

“I’m not saying you should never terminate for these diagnoses or palliative care should be forbidden for these diagnoses. I just want to show that these kids mean something to their parents,” Janvier says.

“And they seem like they have a quality of life that’s acceptable. Doctors are not torturing them. We’re not giving them undue pain. And they should be treated as unique children.”

Farlow says presenting a fuller picture isn’t likely to mislead would-be-parents about the lives of these children.
She suggests people who are trying to figure out what to do often make contact with parents through one of the Internet communities. With videos on YouTube and pictures on Facebook, people get an accurate idea, she says.
“The level of disability is quite clear. It’s easy to grasp,” says Farlow. “There’s no rosy picture that’s made about that.”

She hopes, though, that the study will help the medical community come to understand that there is more to these children than their current treatment reflects.

“It’s not easy, especially in our culture. But at least if they can meet the parents at saying ‘I do understand that this can be positive for people’ then I think that the communications will be better from there,” Farlow says.
“And that’s personally something that I really wanted to see resolved.”

Where's Vera 2?

Looking familiar?

We left Vera prone on the mat with her favourite toy for some DIY training. The next moment when we returned, she was gone! Especially so if you're looking over from behind the sofa.

She must have tried so hard to support herself in prone position that she pushed herself backwards all the way under the sofa, ... well, almost.

She has been showing improvement in her upper body strength recently. However, although we know that she likes to stand/dance, her limbs are becoming thinner and  weaker; she can't stand as long as she used to.

Just look at her cheeky smile when May asked her what she is doing there.

Bath Chair Brainwave

Vera's getting heavier to lift, so we needed a raised bath chair where we could stand and bathe her. I'd wracked my brains for almost a year - looking at all sorts of pediatric bath chairs in the market but finding none suitable. They were either too bulky to enter our small shower area, or too expensive (the one that worked cost S$2500!)

Then came the a-ha moment: Why not use Vera's feeding chair as her bath chair? 

The material was perfect for bath use, there were no metal screws to invite corrosion (okay just one), and it was very lightweight. The cost? S$169, a fraction of special needs bath equipment.

Stand goes into the shower area first.

Chair is placed on top.

Suction mat prevents sliding.

Water collects in the chair, so Ian drilled some holes at the lowest point to drain it out.

Look how snugly it fits under the sink for storage!

Secret Training Progress

Thanks to this handed-down toy from Ian's sister, Vera's improved on her proning quite significantly.

It's from Playskool and has music and moving balls. After 4 years, she's still in love with it. Her gaze follows the balls popping up and rolling down.

We've borrowed the stander for the school holidays and have put her in it a few times.

Vera's cultivated a love for TV. And unlike Daen, she gets to watch it all she wants, which is every night with Daddy till 11pm. Maybe that's why she's been making progress in her proning too!

Angel Vera K

Vera K

22 March 2011 - 19 June 2012

Vera K, the other Vera in Singapore with Trisomy 18, grew her wings yesterday, passing peacefully in her mother's arms. She lived 15 months. Now, our Vera will have lost another of her friends who she has just met last Sept.

When we attended her funeral in a peaceful Danish church, I stared so long at her in her crib - she looked like she was merely asleep. I will never forget those big doe eyes which she got from her mother.

"And with a smile she carries all my cares away."
                                                           - Anonymous

Though her stay was brief, she touched the lives of those she was gifted to. Our Trisomy 18 children speak not a word, yet teach us volumes about miracles, strength, weakness, pain, joy, acceptance and unconditional love. 

Trisomy18 SG

There isn't a Trisomy 18 support group in Singapore for me to join.

So I created one on facebook.

Seeing how wonderful a resource groups like SOFT are on Facebook inspired it.

Our group is small - only a handful of families. But hopefully over time, it will become a  place where families in Singapore can support and celebrate with one another the journeys of their Trisomy 18 child.

And The Flu Spreads

I caught the flu bug 2 weeks ago. The minute I recovered, the two kids came down with it.

Here we go again.

When you have kids, you literally sign whatever past idyllic life you had away.

And exchange it for years of constant worry and weariness.

If it weren't for the fact that they bring immense joy, you'd think anyone would be crazy to have kids.

Comfort Classic is Here!

Respironics Comfort Classic M size

Vera's new mask is finally here from the U.S. and it's a perfect fit!

The opening is just slightly higher than her old Resmed Mirage Micro mask, which is exactly what we were looking for. And the silicon is very soft, much softer than gel, so unlikely there will be the pressure marks caused by the Respironics Profile Lite.

Big thanks to the Respi team at NUH for recommending this.

I contacted the Respirionics sales rep in Singapore but he insisted there was no way he could bring it in for me as it was an old model. So we ordered this from CPAP.com. It's a great service, with an online sales rep chat, and parcel tracking service.

The mask costs USD40, and shipping was USD36. Total was USD76 (S$97).

Now better sleep for Vera may well be achievable again.

Chiropractic Care

We've decided to seek chiropractic care for Vera to manage her scoliosis.

A 10-month plan has been set out for her, with adjustments twice a week.

As one of you has mentioned, Vera is still young so the possibility of improvement in the curvature is there.

The X-ray of the foot shows no break in the bones, which contradicts what the surgeon told us (that we broke it when we overstretched it).

For those of you who are new to what chiropractic does, all I can say is it's something you have to experience for yourself to believe its effects on your body.

It helped me through some periods of great strain to my spine and neck, especially the baby bearing and carrying years.

For chiropractors, surgery is the last resort, and something they find too invasive, so we're on the same page.

Very Bad Scoliosis

The news isn't good.

Two years ago, Vera's spine curvature was 25 degrees.

In the X-ray today, it's 60 degrees!

An unmistakable kink jutting out at her lower rib cage.

If the orthopaedic doctor says it is bad, I don't think he is exaggerating.

It's so severe he's suddenly talking about surgery and putting screws in.

I was totally floored by the news. What happened??? How did we go from routine visits that said, "let's keep monitoring" to this?

Was it because I'd skipped too many of her ortho appointments, thinking there'd be not much change?

Okay so, there must be something we can do right?

Wrong. Even if she needs surgery, the surgeon is not able to do it because there is no space to position the screws because of her small size.

Will bracing help? No.

Will lying supine help? No.

So there's nothing we can do to stop the further bending of her spine. It's just part of the physical deterioration process of Trisomy 18.

I left the room in tears.

Such is the journey of Trisomy 18. One moment you are happy that all seems well and stable, and then suddenly something hits you straight between the eyes.

As a mother, my first instinct is to blame myself. How did I let it slip? I've always been the ever vigilant one.

It is a stark reminder to me, that Trisomy 18 will rear its head, no matter how "fine" things are.

Yet there was a silver lining to the day.

Vera has not been taking well to the new Phillips Resperionics Profile Lite Mask that I got for her. Sleeping badly and waking up drowsy. Red mask pressure marks on her nose bridge, mask gel pressing on the side of her eyes.

Desperate for a solution, I called the Respi team at the hospital, and explained the urgency. They immediately tried to find a mask for her. I was so relieved when one fit beautifully! The Phillips Resperionics Comfort Classic M size. It's an old model and thus unavailable from vendors in Singapore. I will have to ship it in from the US. Times like this I REALLY wish I lived there!

I noted though that M was the largest size. So what next, I was already thinking. But we'll cross that bridge another time.

For now, I'm off to make my happiest online purchase ever.

The Other Blog Member

The other blog member is a quiet one.

He rarely posts. The man of few words is not a talkative sort of guy.

But there's one thing he does.

Ever so often I re-read my posts to find that keywords have links made to previous ones.

Stringing every bit of our journey together across the years.

It's great to have such a blog member for a husband.

Re-fundo Or Not?

I brought Vera back to the surgery team that did her first fundoplication today.

I wanted to know once and for all, if getting a re-fundo would be the best thing to do for her silent reflux.

All in all, there seems to be more cons than pros.

1. There is no guarantee how long the re-fundo will last. (Her first lasted less than a year.)
2. The possibility of keyhole surgery vs open stomach surgery is 50/50.
3. Open stomach surgery recovery is more painful and longer.
4. There is no guarantee that the band will be just right. Too loose and the surgery will have to be repeated to correct it. Too tight and she would not be able to swallow her saliva, leading to pooling at the throat. Surgery would also have to be repeated to correct it.
5. It does not mean that she will not gag on her saliva (which she does frequently now) after a successful re-fundo.

The medical basis for justifying a re-fundo is 1 episode of severe Aspiration Pneumonia involving intubation. Vera has this when she was 2 years old.

She had another episode but did not require intubation, so we'd consider it less severe.

Given the list of negatives, it seems like surgery would be out of the question for now.

The other management options are
1) Continuous feeding. This we are not keen on, given how active Vera's hands are. We'd have to pin her down if it were the case.
2) A Motility medication called Domperidone. Is anyone's kid on this? We are hoping this will help empty her tummy faster as we feed.

Off Day

Being in an industry notorious for long hours, I am lucky to be able to find a job that gives me the chance to work 4 days a week.

It is amazing what a regular weekday off can do for a mother's well-being.

It makes the whole role of juggling work and family that much more achievable.

You can see it on my face.

I get to spend it with Vera, spend it looking after them if they are sick, spend it on myself or with Ian. It's like someone handing you some cash every week and saying you can do whatever you want with it.

***

We're into the May flu season and we've all been hit to varying degrees. Vera has just come out of it, while Daen is still hacking away. Both have been staying away from school.

In fact, due to the prevalence of Hand, Foot, Mouth Disease, hydrotherapy lessons have been suspended, and that's the highlight of Vera's school activities. Hopefully the coming June holidays will break the spread of the epidemic.

I've been too caught up in work to document Vera's improvements. But I will, promise. Mostly, it's been in the vocalising department. We hear a lot more of her, besides complaining sounds, there are excitement sounds, and yakking sounds.