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.

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)

Food for thought and laughter

At the playground, K's playground friend was saying bye bye and that she has to go home and eat her porridge.

My helper turned to K and asked if she too is going home for porridge. K gave a HAHA.

My helper then asked K again if she is having milk for dinner and K replied yes.

Biting and holding up her nibble spoon

I feel glad that she seems like she understood that given her condition, she can't take her food orally.

We give her nibbles of her puree and cut fruits now and then for flavour. But only harder fruits for nibbles (like apple).

She has teeth and and I worry slightly about her chomping off soft fruits like banana :P

She also likes to do her HAHA laughs whenever she thinks something silly is happening around her. When I go "I forgot something", sometimes I will hear this soft HAHA going on behind me.

Her timing is good, i must say. I imagine she could be a comedian when she grows up and can tell jokes.

Pinnacle@duxton walk walk

It seems like a nice day to bring Kaelyn out for a walk. We had planned to bring her to the roof garden on the 50th level of the pinnacle @ duxton for a walk. There was a slight drizzle while on the way there, threatening to spoil the day. But thankfully it stopped and the ground was not wet (dried up pretty quick plus just a short while of drizzle only)

I think it's a good day for Kaelyn. She hasn't been outdoors as it rained during her park time in the late afternoon a few times in the week. And yesterday as she refused to take a nap, we didn't bring her out.

Her nap times are getting lesser. She gets tired but refuses to go to sleep in the late afternoon, and choosing the inopportune times to fall alseep, such as during her chest physio, which is about an hour and half away from her normal bed time. The thumping probably comforts her, even though she has been rejecting pat pats while bed time.

Also the past Sunday have made us worried as she vomited twice in a day last week. 

A year since we knew

It's been about a year since we knew about Kaelyn's underlying condition of Spinal Muscular Atrophy (SMA). When we knew about the full extent of what the disorder would do to Kaelyn, it seems like the world crumbled down. We never felt so  lost and helpless. If I break a leg, I know I can put a cast over the leg, rest and the bones would heal and my muscles would build up strength if i exercise it.

Sleeping time

I used to dread putting Kaelyn to sleep. Since birth, she is jolly spirit. She eats, drinks, bath ,takes medicine and play without fuss. But when it comes to sleep she is very difficult to put to make her sleep. She used to fuss for half hour to an hour.

So to put her to sleep, I resort to patting her even up to 1 year old. Sometimes I pat her a little hard that I am not sure if she was knocked out or being comforted to sleep. 

Sometimes we resort to tickling her ear...which she loves it so much. 

It actually took me a while to realize that just like anyone else, she probably needs to be flipped side to side to get comfy enough to fall asleep. 

So nowadays after some light play time on bed, when she starts fussing, I put her to her side. If she fusses, I flipped her to the other side. Repeat few times and rinse. 

Every now and then during the night, Kaelyn will cry out. It's her signal to flip her to the other side or on her back. I used to just try to pat her back to sleep. I didn't have the thought that she is tired when sleeping on 1 side. Silly dad. 

Another thing, my helper calls Kaelyn a penguin. She now needs the air condition to sleep well (I know...pampered right?) and while my helper shivers under her blanket, Kaelyn just sleeps, sometimes without her blankie. 

Now to fall asleep quicker, I use a hand fan to provide a light breeze onto her back. She loves it as this additional breeze calms her further and lure her to sleep. Talk about getting a princess treatment...

2nd Home Care Session (10/05)

10th May was Kaelyn's 2nd home care visit. It was supposed to be a session with 2 other kids. But none of them turned up, so Kaelyn has full attention from the therapists, nurses and doctors.

We got Kaelyn and daddy weighed in too. 9.6kg. Dietitian decided she has put on weight too fast so reduce her milk powder feed by half cap. We feel it in our arms too when we carry her :P

She got her height taken too. 78.5cm. And she is growing fast such that the occupational therapist mentioned that she would probably need a cuddlebug  in few months time.  Oh well let's delay the new stroller for as long as possible. It will be a rather substantial cost :P

Mummy mentioned if she could stand, she would have reached mummy's bum. But maybe if she could stand, probably gravity and weight would not have let her grow as tall as she is now.

We also decided to start the ball rolling for Kaelyn undergo the gastrostomy procedure. 

NOT gastronomy. I wish she could though. Since she has to be on tube feeding for long term (very long), it makes sense to do this and fundoplication by the way to reduce the risk of reflux. But it would be months as she has to undergo appointment with the surgeon and perform some tests before they would go ahead. 

Happy morning

Kaelyn woke up feeling really happy this morning. She is all along a morning person. She wakes up cheerful. But this morning, she was especially happy. Not sure why but maybe she had some really sweet dreams the previous nights.

When you ask her to call papa, mama or auntie (our helper), she gives a short grunt or hmpf. If you ask her to sing a song, she actually pulls that grunt or hmpf longer. I am also glad that she is known as a courteous girl as she will greet and wave hello to any visitors who greeted her.

However we noticed that her movement in her mouth/lips area has lessen. From her old videos we had, she had more variance in her pitch and rhythm in her vocalization. She also used to be sticking her tongue out as and when. But now, she could only manage a short peek of her tongue out of her mouth. It could be the muscles being weaken in those area. This will probably affect her speech. Perhaps I wouldn't be able to hear her call out papa or mama.

No matter, every morning she wakes up with a beautiful smile is an added bonus for us. We treasure it.

Time for Vaccination

Upon advice from doctors, we got Kaelyn to go for flu vaccination. She was scheduled for this jab for quite a while. It had to be postponed due to hospitalization, fever or was on anti biotic medication.

Finally, she is ok to go for the jab. But she has 2 for the day, since it was time for her 2nd pneumococcal jab as well. So 1 jab each up her left and right bum.

She is quite experienced and remembers her experience of her jab well. The moment she was flipped over for the jab, she started tearing up. But anyway she finished without much commotion.

However we had to stay a little longer than we wanted in the clinic as she desat due to her secretion. We cleared her up and got out of the place.

Kaelyn's Lunar birthday

Kaelyn's lunar birthday just past. Grandma took the effort to make the red eggs and longevity noodle for her.

Although she couldn't eat any of the above, she had some fun posing with it. She also had the chance to have a few licks of the egg and noodle.

This girl is loved by all :) and we are thankful for that