da da ma ma

I walked past Kaelyn’s room one evening while the door was ajar after we had just carried her into her room.

Mummy’s with her.

She grab mummy’s attention with her vocable call for attention. Mummy asked if someone walked past the room.


She answered yes.

Mummy asked who was it?

She managed to vocalized “da-da”

We tried that a few times of me walking by and Kaelyn calling out and identifying who walked past.

Then I switched role with mummy.

She manage a “muaaa”

Later I told her to try this “muahahahha”, something like Dr. Evil’s laughter.

She did a “muaa. Haha”

ROFL literally.

Her body is limiting everything a human can do. Even the muscles to smile is diminishing. When smiling she could only manage to curl one side of her lip up.

It’s really nothing to scream about for a 3 year old to barely make phrases or speak the words that resonates with just ahhs but inside us, we are squealing with delight for Kaelyn.

an earlier home care appointment

We brought Kaelyn to her home care appointment last Friday. It’s her first time out of the house since last December (not counting trips to the A&E)

It was supposed to be 2 weeks later but it has been an eventful month (here and there). Home care and Starpals team deem it significant to bring forward the appointment.

Mandatory for every visit. The weigh in of daddy and Kaelyn. We totaled almost 100kg(97kg). We both grew in weight! Kaelyn was almost 15kg

I think she grew in her height too at 103cm.

There were discussions which mainly focus on her current main risk now, which is aspiration.

Recommendations were thrown in 1. Change to a faster absorption milk feed 2. Change to a GJ feeding tube

We are leaning towards option 2 ultimately as option 1 is a may/may not help.

However the frequent reports of bursting of the current batch of GJ tubes worries us.

Rude awakening

To hear a shout in the middle of the night from Kaelyn’s room with oximeter alarming is always not a good thing.

She looks like she was in discomfort. We went through part by part asking if this was painful. she said her stomach was aching. We had to suction her thick secretion present in her mouth.
It wasn’t the 1st time tonight she had to wake up and be suctioned. I was too deep in the sleep to hear what’s going on.

We cleaned her, settled her down and stabilized her and everyone tried to went back to bed.

Another shout.

This time she was aspirating. One of the worst fear we have.

My helper was suctioning. Had to bag her for a while. Managed to clear her airway and pacify her to rest without more drama.



Let’s hope no more drama

Kaelyn aspirating isn’t the first time within a short time frame.

It seems it happens when her body is stressed. It may be a sign of fundoplication becoming loose.

Right now K is knackered and is asleep with higher than usual heart rate. The oxygen concentrator is still humming away, providing O2 for her.

I couldn’t rest now, but just wondering…

How could we do without the oxygen concentrator for 2 years?

Silly me. By running to the hospital every time shit like this happens.

Both hospital and us could save more money by making this a subsidized standard item for special needs kid like K in the beginning. We save on hospital trips. They save on subsidies. They just need to prevent us from going to hospital 1 time less to cover the cost.

PS Just going off tangent wildly on the last part. Silly sleepy brains not going to sleep but having silly thoughts now.

3 not so easy years

We celebrated Kaelyn’s 3rd birthday over 2 weekends.

First one was with a volunteer and her friends, where Kaelyn got serenaded with singing from the visitors.



The 2nd was with immediate family members where Kaelyn was a princess for the day.



Every year is worth a celebration considering 2 years is the average lifespan for SMA Type 1 kids.

I think for them to wake up and breath everyday is a miracle for them.

The simplest task of swallowing water could choke them.

The suit of Darth Vader probably don’t help much.

There are ups and downs. The bad days life threatening, while the the ups are simply having fun days that puts a smile on K’s face (and without any choking or mucus pluggin episodes) and we treasure that.

The highlight of last year was of course the trip on the cruise. Kaelyn absolutely loved it. It sure took quite an effort on the logistics part.

We were also faced with literal life or death decisions yet again in the wards of the ICU, where we contemplated hard about Kaelyn’s life, death, quality of care and comfort.

We are thankful that we didn’t have to go through with our worst case scenario decisions.

Every checking out from a critical stay in the hospital feels like a student just scrapping pass the exams. Just barely made it.

We made it through another year. But we have to be realistic. But as much as we want to, for now, we cannot beat SMA.
In fact at any time, if a mucus plugs her airways or she aspirates her feeds, her life will be in danger if we are unable to clear it in time for her to breathe.

But for now, we celebrate the days. We try to lead an inclusive life with Kaelyn with the support of friends and family (even strangers for that matter) and face the challenges of a special kid.

Happy 3rd Birthday Baby (Although you are now grown up and don’t want us to call you baby now)

A helping hand

I was doing some cleaning of the bookshelves when I came across the book Fred and Reb passed to us.


It reminded me of the time when we just discovered that Kaelyn’s journey is going to be different.
I supposed you could say it was dark days.

What to do? We didn’t know the when, whats, hows and why.

We could only turn to the Internet. We found articles writing about SMA being the number 1 genetic baby killer, does not live pass 2 years, no cure. It was depressing.

We found the Muscular Dystrophy Association Singapore (MDAS). Sent an email in asking for any help but was expecting my mail to be lost in the imaginary heap of mails that is the enquiries mailbox.

But we did get a reply and they linked us up with parents who were willing to share their experience with us.

Fredrick and Rebekah was one of them. They let us visit them and they shared their experiences of their own. Their younger daughter, Danielle, also has Spinal Muscular Atrophy (SMA).

It sure helps with a helping hand, especially one who have walked through the road we have to take.

Just some bad days

Sitting down, and starting to type out this entry after a bumpy evening. My helper is putting Kaelyn to sleep earlier than usual.

Kaelyn heart rate was tachy and wasn’t holding her spO2 too well this evening.

We didn’t finish her sets of cough assist. We gave her a break after checking that she sounds clear enough.

She just wasn’t holding it too well today.

Seems like she’s like this when she doesn’t get enough rest.


Last Saturday was more stressful.

Same thing. Tachycardia and spO2 didnt hold up well. She even seem to aspirate her feed.

Aspiration of her feed is bad as it could go into her lungs and lungs could collapsed.

SpO2 dropped well into the 50s% (healthy is 95% and above)

We standby to bag her on Saturday. But we didn’t have to. Good not to stress her body further.

After her own record ICU stay, she’s really more fragile.

Her fingers weaker.

Ankles stiffer.

Her smile is fading.

Her voice lacking her usual strength.

The combination of the progression of her disease, splints preventing her hand movement, IV lines preventing her wearing of her AFOs just takes the poll on her.

I go to bed thinking when she recuperates enough, maybe she can wave her hands, give me a bigger smile and shout so loud from the hall, I can hear from the corridors when I come back from work.

Just a weak maybe.

She’s in good spirits most times, but it just takes lesser to set her off now.

if she starts to not have quality naps and night sleep, She is literally alarming. Her heart rate goes up to 180–190 like a sports car going into the highway and her spO2 goes below the healthy level and stays there long enough for you to worry.

It’s like screw it, I am tired breathing normally. Take 5. Breath harder in awhile. Let them go fix me a dose of O2 therapy for me. Chop chop.

We scramble around, put her into her favorite position, suctioning what we could suction, supplement whatever appropriate dose of O2 she needs.

Amidst the frantic action going on, We tell her It’s ok baby. Rest and relax, but just remember to breath in breath out.

As K’s previous therapist told us, We are going to have just some bad day now and then (somewhere along that line)

Just some bad days.

Out of hospital

Kaelyn has had her endotracheal tube (ETT) removed, discharged from the ICU and has made it home.

3 weeks ago we admitted her into the hospital We have had difficulties managing her secretion and mucus while in the High dependency ward after almost a week and had to bring her to the ICU, put in the ETT.

While on the ETT, it has been easier for the medical staff to manage the secretions. 

We had the ETT removed last Thursday. She sustained well on her own going back to the nasal mask.

She is back home to her routine of trying hard to refuse naps and sleep. 

She seem to have grown an inch when put on her mattress for scale. 

She still seem fragile.

But her voice is gradually coming back and getting louder, and still has her playful spirit.

She tried making funny noises, found it amusing and kept making it, until her secretion got caught up and had to have a slight suction to clear her throat. After that, back to making those noises.

Her mucus in her nose is still never ending, although manageable through our suctioning.

She still has some thick old gunk in her nose being suctioned out.

I did it for her nose again last night and drew some fresh blood. I stopped doing for her nose. I didn't want to traumatize her nose anymore. Although I would definitely have to try to do it some time next day. 

Suctioning is such necessary evil. And she's such a trooper, just nodding if I ask her if it's comfortable, and shaking her head if I asked if it was painful.

We are thankful she sustained well after coming off the ETT. There would be painful decisions for everyone, in the short term or long term, to make if she cannot come off the ETT.

This is Spinal Muscular Atrophy.