My nasal tube insertion

Oops it's been quite a while since the last update. Dad has been lazy to update for me. But anyway he is doing it, so maybe tonight I shall sleep and not wake him up. We'll see about that if his snores will disturb me.

Anyway I was recently admitted to the KKH. It was a controlled admission, or rather voluntary on mum and dad's part. The reason was that we have been advised by the feeding therapist to get a nasal feeding tube put into me. I was kind of struggling through oral feeding of liquid, plus there is the danger of silent aspiration as a VFSS had shown previously. So the nasal feeding tube would bypass the throat and down into the stomach. This is to help me receive my adequate amount of milk or water each day, and reduce the chances of liquid going into my lungs.

We are going to the zoo

It's been a while since I have any updates. Dad is lazy to type for me over here. Anyway let me tell you about my trip to the zoo and the things I missed.

Yes. Dad told me that I have missed out on the big animals like the lions and giraffe. Why?


Because I snoozed again. ALAMAK! You can't blame me. It was sunny. It was warm. It was humid. I was rocking in my pram. It was warm. Did I tell you it was warm? All these factors combined just knocks me out.

Anyway Dad and mum had long wanted to bring me to the zoo. This is one of the places they had wanted to bring me to the most! Mummy by chance got her hands on her company's pass to the zoo. So we rocked our way down to the zoo together with cousin Isaac, Yi Yi & Yi Zhang, Grandma and Grandpa.

So many people right...We also brought so many things too. Look at this.

Dad even bought his own cold drinks. Mum approves of his action *facepalm*

This is with mummy in front of the zoo entrance. I am acting fierce. LOOK FIERCE RIGHT!!??

These are what i remember seeing when I was awake during the trip. It was all these small animals. There were squirrels, meerkat, parrots. And there are always a lot of monkeys hanging around the trees.

I must say that dad is a very lousy photographer. He takes pictures of me not looking at the screen. But he did help me take some pictures (but also not very good quality) of those big animals I missed. The lions and the giraffe.

Besides the animals I missed while sleeping. I also missed the animal show. WHY LIKE THAT!!

The warm weather take a turn when we were at the animal show. Dark clouds gathered and showered buckets of rain! It was raining so heavily the show was cancelled :(

Although I have missed out on a number of animals and missed the animal shows, this is one off the list where dad and mum wants to bring me to. I am sure I will come by again another day to see the animals I missed.

Pool time

One of the things I have, which some people wish to have in their house is a pool. I have got a mini pool at home. Or maybe you could call it a tub. Grandpa got this tub not long ago from his friend, whose kid has outgrown it.

It is an inflatable tub which is pretty huge. It is placed in the common restroom at home. So sorry for the visitors using the restroom. This tub has put them in a pretty tight squeeze.

The VFSS Session

This afternoon, we went to the hospital again. This time round, the doctors are interested in how I eat. They want to see how the food will travel in my stomach body. They call it a Videofluoroscopic Swallowing Study (VFSS). This is because of the possible weakness that will happen in the area of the throat that aids in swallowing my food and drinks. They were afraid that my food and drinks will go to places they are not supposed to go to. Hence they will look at if that happens though this procedure.

Living the life

These few Saturdays, I have been having a lifestyle mum and dad has been yearning for. Massages in the day. They have been attending a 3 session long massage package for me. So in this package, I get to be massaged and  mummy and daddy will learn how to to do it for me too. They'd better learn it good :P

For the last massage session, I came in without my pants. This is what happens when daddy is in charge of putting together my wardrobe for the day. Tsk tsk.

Pictures on instagram

Ever since dad got my result of blood test for SMA. Dad has been taking a picture of me everyday at least documenting of what I was doing. Hmm well he almost does it everyday. Sometimes he is tired. How do I know if he is tired? He SNORES real loud at night. That's how I know that he is very tired.

Anyway he puts these photos of me (doing silly stuff. MUST BE) on Instagram and hash tagging it as #kaelynaday

You can view some of my pictures here on the web instagram or you can follow my dad on instagram @vynny

No particular reason for doing this, he says. Except maybe for tracking the days after I have been diagnosed with SMA Type 1.

What is this Spinal Muscular Atrophy

I have been visiting the hospitals quite regularly these few weeks. I always hear mummy and daddy talking about Spinal Muscular Atrophy with the doctors and therapists.

Just what is that? Daddy copy and pasted something from wikipedia for me

Spinal muscular atrophy (SMA) is an incurable autosomal recessive disease caused by a genetic defect in the SMN1 gene which codes SMN, a protein necessary for survival of motor neurons, and resulting in death of neuronal cells in the anterior horn of spinal cord and subsequent system-wide muscle wasting (atrophy).

This SMN seems like food for the motor neurons. Without food, they will die and hence will not control the muscles. Like me, I go weak and hungry without milk.

So this is why I am unable to lift my head and legs. I also belong to the Type I category. 

Kaelyn goes to East Coast Park

Dad and mum, as always, wants me to feel the wind in my hair, whatever the amount of hair I have. So they have been trying to get me on a bicycle with them or to rollerblade with them.

So one fine day, they arrange a Sunday picnic with some cousins of mine down at the east coast park.

Mum and dad told everyone to meet at 9:30am near the MacDonalds at East Coast Park. I hear kids love this MacDonalds. I think I will like MacDonalds too.

Kaelyn goes to Sentosa

It was a Sunday. As usual, I woke mummy and daddy up at 6am. I was particularly excited. Daddy mentioned something about getting on wheels, cycling with me and feel the wind in my hair.

But daddy, you have to get something right. I am still considered botak (no hair). I feel the wind right on my scalp, not in any hair.

Anyway I was washed, fed and dressed and whisked out of the house. Then dad decided it's too late in the morning and probably too warm for cycling. So we went to do one of mummy's favorite activities, going to the shopping malls looking for clothings for me! 

YAY for mummy.

After our lunch, dad still decided that it was still quite warm. So he mentioned about visiting a world of water or underwater world at Sentosa instead. 

It sounds really great until we got there. The queue was super duper long for the underwater world. And It was so so warm out there :( 

But i got to see what's a snake.

I saw some tortoise.

I saw the beach.

But it was so warm. I was sticky from the sweat and heat. Daddy was sticky. Mummy was sticky too. We left shortly for the comfort of the cool air conditioned room at home. We just slept through the afternoon.

I was glad for the aircondition...ZZZzzz

hello everybody

Hello everyone, my name is Kaelyn. I was born in the February of 2012. Mummy said I  was always kicking around and doing drops and somersaults in her tummy before I popped out of her tummy. 

Daddy said that I was a really angry baby when I popped into this world. I was screaming and crying when he first set eyes on me.

Me? Angry and screaming? I am such a sweet baby. How could I do that. Oh well...maybe when I am hungry or warm perhaps.

Me jumping, doing somersaults and kicking in mummy's tummy? I can't really move myself right now.