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.

Respirionics Profile Lite Mask

Back then - so upset with the full face mask

Three years ago, Vera tried on her first mask ever. I remember it vividly. We were at the hospital and the nurse took out the Respirionics Profile Lite. It was supposed to be the most suitable nasal mask to use as a full face mask for paediatric patients. But she hated it. We left the hospital with no mask solution.

The Respirionics Profile Lite (L size)

Today, at 4 years of age, we find ourselves back where we started, but in a good way. Vera is switching to the said mask, as her Resmed Mirage Micro which we absolutely love, is now barely able to cover her mouth and nose. Alas there is no bigger size of that. 

We've been slowly weaning her into the new mask, and this time, there isn't a hint of resistance. She knows whatever it is helps her sleep. 

For Vera, I will do anything to get her the best of what she needs. Perhaps because she can't tell me if something's comfortable or not for her. 

So here's our configuration: 

1) Mask - Respirionics Profile Lite (remouldable gel)

2) Headgear - SleepNet cap-style pediatric

3) Tubing - Breas, very soft, light and flexible

4) BiPAP - Breas iSleep 25

We hope to get her used to this mask soon. Because we'll soon have to sort out her other current issue - Reflux. And that might involve surgery for a re-fundoplication.

Piggy & Teddy

This is a book well-loved by Daen. It tells the story of PiggyWiggy and Teddy, two friends who are quite the opposite.

But at the end, though they spend lots of time apart, they are still best friends.

I thought this would be a good way to have Daen understand his relationship with Vera. They spend most of the time apart - he goes to school and she stays at home, and they can't play and talk with each other.

So I got him these:

Piglet from Winnie the Pooh, and Teddy from IKEA. I tell him that the Piggy is Vera and he is the Teddy. He knows that for a fact now. And we act out how they love each other, and sleep in bed together, which in real life he doesn't do with Vera cos he'll be climbing all over her.

Once in a while, we catch spontaneous acts of 'sayang'. It really warms my heart. Through Piggy and Teddy, perhaps he'll know he have Vera with him, even when she's not.

March In Pictures

Finally, a window of time to blog. At 5am in the morning!

I'm on a pitch and that means crazy hours...for a couple of days.

Lots of good memories were made in March.

We were invited to little Vera's One Year Old party. This picture is worth a thousand words.

Two Veras surviving Trisomy 18 on 24th March 2012, with their proud parents.

Then Daen turned two. We had a simple celebration at home.

I love it that Vera was looking at the cake. (Serene, she can still wear the T-shirt you made for her!)

We brought him to the Singapore Flyer, the 'biggest observation wheel in the world' as they claim.

Daen took a step back, thinking he was going to fall off.

In the background is Marina Bay Sands, now a Singapore icon

Meanwhile, Vera continues her Early Intervention at Rainbow Centre, improving slowly but surely.

May the spell of good health for all continue into April!

Four Day Week

I've gone from freelancing to a four-day-week full-time job.

In my line of work, where the pace is known to be frenetic, it's sounds almost too good to be true. 

Well, we'll see how it pans out. 

If it works, I'll get the best of both worlds. Steady income for the work which I love doing, and extra time for myself and/or the kids. After all, who hasn't dreamed of working 4 days a week (albeit for lesser pay)? To me, as a mom, it is just right. Enough to give me a sense that I still have somewhat of a career, and not to the point where I feel like I'm shortchanging my kids.

I guess it's a step in the direction of that elusive 'Balance' we all try so hard to achieve.

Of course, it's going to get tough when the kids are sick. But hopefully, given the more flexible working style of a small company, I'll find a way around it (like work from home at times). It's a real plus too, that the office is a 15-minute drive from home.

To be honest, I never thought this day would come. When I quit and became a stay-home mom to care for Vera, I really thought I'd left my career behind for good. And then when Daen came along, adland became even more of a faraway land. 

Three years on, with a good help who loves Vera, and a good childcare for Daen, I can firmly and finally step back into the workforce.

I've always thought I'd make a better mom if I'm working. I've learnt that not every woman is cut out for the extremely trying, no-let-up job of a stay-home mom. Sometimes I think it's a shame, that as modern women, taught since young to focus on our education and careers, we no longer see ourselves as existing simply to birth and mother our children, as how it was a few generations ago.

A Simple Celebration

Thank you all who care most about Vera.

Thank you all for cheering her on as she grows, in person or through this blog. Your support, online and offline, are much appreciated.

This Tri-er is Four!

Slept well, all smiles ready for school on her birthday.

One of Vera's pet past-times, making a 'siew mai' with her lips.

She tires by the time it comes to cake cutting.

Hooray! We're not in hospital!

A Problem With Her Foot

I brought Vera to see the Orthopaedic surgeon today. My concern: A feeling that her spine was getting increasingly curved, and that the bone in her left foot was increasingly protruding.

To my dismay, the surgeon believes that it is caused by us doing too vigorous stretching of Vera's foot. Due to the extreme tightness of the muscles above her heel (where my right thumb is), we may have inadvertently cause the bottom joints to "break" and weaken when we force the foot to stretch upwards.

The surgeon thinks that surgery might be needed to lengthen the muscles just above the heel. He also did a check on her back and confirmed my suspicions: her spine's curvature has increased. By how much, we shall only know in 3 months' time (end of May 2012), when she's scheduled for an X-ray (spine and foot).

Weight Loss

I lost 3 kilograms in a span of 2 maidless weeks.

The tummy's tucked in. The trousers are loose. The collarbones jut out more.

Just by looking after Vera.

It was extremely draining, but well worth it. I never thought I'd be able to lose the pregnancy paunch after so long, even a bit of it, ever. Not without an exercise regime. And now Viola!, I'm an 'after' picture!

The babies that make you gain weight, eventually help you lose it.

Life works in wonderous ways.

Maidless

We are maidless for 15 days as our helper is on home leave to the Philippines.

Any parent will tell you that being maidless after you've come to depend on them 24/7 is no joke.

I struggle to meet the feeding schedule I myself set for Vera. Ending up missing feeds and having her wake up at night thirsty/hungry.

I would be first to confess that I am not as good as my helper. Meaning that I cannot handle the same amount of chores + cooking + looking after Vera & Daen + not sleeping at night - as her and still function. Even with Ian's help.

So by Day 3, I called in the reinforcements.

My mom, my aunt, my grandma, my sis-in-law.

Thank god I have reinforcements.

A Fab Feb

We've emerged from Jeopardy January and things are looking up. 

Vera's well and back to school. So is Daen. 

My helper Beth on home leave for two weeks. So we're keeping our fingers crossed no one falls sick during this time. 

It's been a great workout for me playing maid of the house again; it's my 2-week slimming program. Housework and wakeful nights work wonders on the waistline. 

Vera's birthday is coming up as well. I can't believe she's turning FOUR. 

FOUR is an inauspicious word for the Cantonese: it sounds like 'Die'. 

We're ignoring that and going ahead to celebrate Vera going against the odds and being such a survivor. 

Initially we (or me mostly) weren't in the mood to celebrate her birthday, but I think after January, we could do with a bit of joy yah?

Here's hoping for a fab Feb for you all as well!

It's Hard To Have A Happy Start to the Year

It's hard to have a Happy New Year.

Here's why. 

January is one of the worst months to start the new year. If I had a choice, I'd start the year with August, or September. Those are usually quiet, uneventful and relatively peaceful months. 

January is Major Anxiety Month. At least it's been for the last few years. 

January is when I had to deal with news of Vera 'having problems' in my tummy. 

January is when Vera fell sick, very sick with Pneumonia coming to 2, and I was making hospital rounds while very pregnant with Daen. 

January is when Vera fell sick again coming to 3 and did time again in hospital.

This January, as history would have it, is living up to its reputation.

I have been plagued by a persistent cough since December.

Daen was infected with Hand, Foot and Mouth Disease after his first week, and first time, in Childcare. We've just spent one week dealing with it. 

Just when I was mentioning how lucky it was that Vera didn't pick it up from him (we had them strictly separated until he was fully well), she is sick. She vomitted four times after milk. Runny nose, fever. Please, just don't let it be HFMD.

As of now, it's back to separating them again. And a return to suctioning and lack of sleep.

There are two flu seasons: December - February. May - July. We're at the height of the former now. 

And to top it all off, in January there's 'Happy My Birthday', 'Happy Our Wedding Anniversary', and 'Happy Lunar New Year'. 

January's tough I tell ya.

Water Water Everywhere

The best part about living in Singapore is that, because it's such a small island, you can get a whiff of the sea anytime, in no time.

Today, we checked out Woodlands Waterfront, a seafront to the north, overlooking the Straits of Johor, Malaysia. Another morning outing with Daen since Vera's asleep.

Instead of the rain that we've been having the past month, the weather was perfect and the boy had so much fun he knocked out on the way back.

Happy 2012 Everyone!

My mummy thought I'd never be able to sit like this, but what d'ya know? I'm full of surprises. It's taken me a long time, but hey, that's me. Wondering what else I'll be able to do in 2012? Stay tuned!

A Privilege

If I look absolutely thrilled, I was. Because the baby in my arms is none other than the beautiful Vera, who at less than a year old, has made it through a surgery, fought her way back from the brink, and made it home for her very first Christmas. For parents in the Trisomy 18 world, experiencing miracles like this is a painful privilege - the joy comes enmeshed with heartbreak, too much anxiety and too little sleep.

If you're a parent in these shoes and have asked "why me?", well, we are the ones who have been chosen - to know life, raw and unplugged. We live each day intimately acquainted with the basics of life - breathing (how hard, how fast), sleeping (what time, how much, how fitful), and waste matter (how much, how often, consistency, texture). And within these basics of life, are where its profound meaning is unearthed.

It was such a privilege to hold Vera today and momentarily feel the strength of her grip in spite of her frailty.

And the best part? We were decked in red and white stripes, a simply delightful coincidence!

Vera's daddy's ingenious contraption - A microphone holder! 

Now why didn't we ever think of that? Now more 

tube-feeding parents can take a much-needed break : )

Christmas Lunch

For the first time actually, we had a nice lunch with my aunt and grandma with Vera. I always make sure it's somewhere relatively less crowded, quiet and with aircon. If Vera's comfortable, she's unlikely to be cranky. 

It is a dream come true for me to be able to dine with her, outside, with relative ease. No more discomfort, arching, vomiting...oh I remember those days. I use to envy mummy Rae and how she takes Rachel everywhere and she told me 'your time will come'. She was right!

I'm happiest when I see my Grandma playing with Vera. It is not lost on me how precious these moments are, as my Grandma is already 90 years old.

We must make it a point to do this more often.

Holiday Cheer

All too quickly we've come to the end of 2011. Vera got a really pretty hairclip from Auntie Sher of Offsprings fame. I've been looking around for nice hairclips that don't pinch the hair but in vain (okay I've only shopped at the only store in Punggol.) Thanks Sher!

This other gift was a surprise - from a mummy who follows this blog, Stephanie. You'll be pleased to know that Vera enjoys it very much! It's perfect for us actually. She can entertain herself while we take a break : )

Meanwhile, we've been asking Daen to "teach chea chea" how to do things. Here he holds her hand and presses it on the piano.

Vera looking up to her 'big' brother (who's already graduated to a toddler bed). She looks shorter because of her weaker muscle tone in her back, but they are actually the same height now. Looking at this picture makes all the busyness worth it.

Guitar Girl

Without a doubt, Vera loves the guitar.

Before, she would just pay attention when I play and sing. Now, just hearing the sound of the strings and she can't contain her joy. Daddy captured her plucking the strings as well.

I just love that she responds so well to music. Probably because we give her so much of it!

Angel Charmaine

Dear Yvonne,

I knew something was amiss when you didn't respond to my email. I feared the worst.

That last thing I needed to hear was that Charmaine passed away on the same day as baby Ruth.

I am sure it is an extremely heart-breaking time for you. Those pictures you sent me of her deck up so prettily always are so precious now.

I celebrate with you those 36 months and 1 week.

Sincerely,
May

Rest Now Baby Ruth

It is with tears in my eyes that I write this.

Beautiful baby Ruth passed on yesterday morning after a valiant fight against a bad lung infection. She made it past the 1-year milestone.

Her parents are the bravest couple I've ever met. Soft-spoken, unassuming, but full of steely resolve and firm advocates of giving Ruth a fighting chance.

This is too hard to write about, so.

Rest now, dear little one.

3 Years 9 Months

3 years 9 months holds special significance for me. 

That is how old Vera is now.

That is also how long Annalisa lived.

Annalisa was a Trisomy 18 girl that I found on the Internet when Vera was a few months old. At that time, I was desperate to find a living case of Trisomy 18, or a family in Singapore.

I looked her mother up, I needed to talk to someone in my shoes so bad.

I learnt that she had just passed on. Till now, I remember what her mother told me: "She lived 3 years 9 months". She also looked at Vera's baby photo and said, "Your child is special."

Ever since then, 3 years 9 months had become almost a benchmark in my mind. I've wished for Vera to reach this point, because Annalisa did. Tonight, I looked at Vera and could almost imagine the same goofy happiness Annalisa exuded in her videos. 

I've lost contact with her mother and so will not post pictures.

Sweet dreams Annalisa. Wherever you are.

I Don't Understand

It baffles me.

I don't understand why Vera is still here. I don't understand why she is so happy every day. I don't understand why she is doing as well as she is. I don't understand why she is showing improvement far beyond what's expected of her. I don't understand why she's been born with such a dreaded condition, only to be spared the worst of it.

As many of my friends' grapple with serious lung and heart conditions and loss of their Triers, all the more I ask: "What have we done to deserve Vera?" "What have we done to deserve the relatively smooth ride thus far?"

The humbling answer is: "Nothing."

Which makes it even harder to understand. 

But it is through the un-understandable, that we learn that not all of life is knowable.

And the best thing to do is simply accept the mystery of grace. And be thankful big time.

The Decision to Freelance

I have been thinking about whether I should get a full-time job.

The obvious perks: Paid leave, medical insurance, employer-paid retirement savings, and steady income.

But there's always a nagging worry at the back of my mind. What if Vera falls sick? Will I be able to just take off at a moments' notice? Knowing that with her, a bout of illness is a 2 week affair. And because we've committed to round-the-clock personal care for her whenever she's at the hospital, I'll have a shift to do.

Also by working full-time, will I get to spend enough time with Vera?

It becomes clear to me that I have to freelance.

It means that I can decide whether to take up a project. If I prefer to spend time with Vera or bring her to the doctor's, I can choose not to take up any. If she falls sick, I can stop work immediately.

It seems to make sense.

I am so thankful that I have a job that allows me to freelance.

Back To Work

Just as quickly as I had left adland (to care for Vera), I'm back into it again.

The difference in routine is marked.

And I would say, working is less tiring than staying home.

I sit in air-con comfort, have free-flow of cappucinos, chat and think of ideas, have yummy fare for lunch.

Compared to:

Push Daen out to buy groceries. Feed breakfast. Watch him at playground.
Bring him back for lunch.
Take Vera out for sun, standing therapy.
Bring her back for bath.
Put Daen to sleep.
More therapy with Vera.
Daen wakes push Daen out to play.
Bring him back for dinner.
Push Vera out for evening stroll and more standing.
Come back put Daen to sleep.

I miss all of it. But I'm glad I got the chance to do it all.

I hope Daen has grown enough to find his own feet, and will get used to not having me on demand. Not that he's ever been clingy that sweet boy.

Vera? I now see her for less than 3 hours a day.

I'm trying hard to convince myself that this is normal, many parents are in these shoes, and I'm not neglecting my kids.

Surgeons

I don't envy surgeons.

When parents of a Trisomy 18 kiddo come to you and say, 'Please help my baby', what do you do?

Tell them 'erm...the risks are very high, you may lose her on the table, even if we operate and she survives, she won't last very long so what's the point. Plus she will continue to be high-need and low functioning.'

Or do you say 'ok, if this is the problem, this is what has to be done. The risks are very high, and you must be prepared to lose her, but we'll do whatever we can. I can't tell you if she will make it, that's up to her. If she does, potentially it could give her a few more months or years.'

I guess the difference lies in where the surgeon stands on the concept of Futility and Hope.

Both lie on opposite ends of the spectrum.

Where does one end and the other begin?

Are surgeons in a position to decide?

If the risks are too high are they still worth taking, to buy time for love?

How do they reconcile with failed attempts? Do they 'just move on' or break down and cry too?

Such a heavy responsibility - holding the fate of someone's child in your hands.

Toddler Time

Daen's officially a toddler.

We take him out whenever Vera is sleeping, so he can expend his energy.

Here he spends some quality time with daddy. It is going to get lesser now, as daddy has been working late almost every day recently.

Spending the last 18 months with Daen has been a real privilege. He is active, sociable, observant and loves nature. He greets anyone and everyone. He loves sticks and snails. He dutifully picks litter and disposes it in bins.

I couldn't have asked for a better little boy.

Sengkang Wetland Park - Tranquillity a 5-minute drive away

Silent Reflux Confirmed

Results from the PH Impedance study are in.

Vera definitely has Silent Reflux. That means although she doesn't vomit, fluids are going up and down her oesophagus all day. 147 times/day to be exact.

About 50 times, it goes up as high as 9cm about the stomach. Which is quite near the lungs. Not good.

Solution?

Well, there is no long-term solution. Reflux is something that cannot be cured once and for all.

We could put Vera through surgery for a re-fundoplication - tightening the band leading out of the stomach - preventing fluids from going back up, but that commonly lasts for 5 years. In Vera's case, the first fundoplication when she was 1 year old lasted only a year. So we're not too convinced of its durability in her case.

Plus, we're told by the surgeon that the re-fundo needs to be done via a cut on the stomach, which sound a little drastic. The first time round was using keyhole surgery. If anyone has had a re-fundo via keyhole, do let me know!

My other greater worry is intubation. Vera has had surgery twice, and both times, intubation was difficult and quite a challenge for the team. Basically that means lots of trial and error, in and out, and scarring and swelling of her oesophagus.

The plan now is to wait until something happens. Meaning, if some fluids go into her lungs and causes Aspiration Pneumonia, that will be the time we seriously consider the surgery.

Meanwhile, we continue the costly medicine Omeprazole, which makes the hyperactive fluids un-acidic. Liquid going into the lungs is bad, but acidic liquid is worse.

Let's hope the fluids behave themselves and don't stray too much.

Stackable Stools

Face rash has cleared. Mucus is almost gone. Vera's getting back to her sit-stand routine.

These stools from IKEA are just great. Its stackability allows for height change as Vera grows. I tried two, and she wasn't too happy. Three and she's sitting relaxed and happy to pull up to standing.

This is what they use for the kids in class too. So we practice every day at home. Getting her used to having no arm rests.

It would be a milestone to have her sit and balance on a stool without any backing for the length of Circle Time. I know she can do it.

Every Day

Oh how ordinary it may seem

that we're living a miracle every day.

3 years 7 months 2 weeks with our noisy girl.

Tegaderm Rash

The Tegaderm (transparent tape) used to fix the ph probe has left a rash on Vera's cheek. Although thin, it is not as soft as an ng tube, leaving a reddish pressure point at the corner of her nostril as well.

She's developed a low grade fever as well, but for now, we're still managing at home.