30 September 2011

Sick Post Study

One day after the ph Impedance Study, Vera has increased secretions.

It could be that she aspirated on some of the milk she vomitted while lying down. Or that she picked up a bug in the ward (guy in the next bed coughing, student nurse with a runny nose).

I"m hoping it doesn't develop into 2 weeks of suctioning or fever.

29 September 2011

Ph Impedance Study




We're back home after the 24-hour study. All went smoothly. Just a little vomitting of milk, which I'm sure is due to the tube irritating her throat.







Here is a close look. You can see the measuring "frets" I call them. I'm just happy it turned out to be a really thin tube and not too difficult to insert. I think it's probably a 06 size ng tube size or slightly smaller.


It was good that it was portable, so we could still bring her to the playground. NUH has a lovely open space next to the kids' ward. Here, Vera actually holds a smile until Daddy got the shot : )

Results in 2 weeks' time.

27 September 2011

Silent Reflux?

After dallying for a few months, we're finally going to put Vera through the PH Impedance Test tomorrow.

She will be warded for the 24-hour study at NUH.

Vera has been taking Omeprazole for reflux for nearly 2 years now. The dosage costs us about S$150 (USD$117) each month.

In this time, she has hardly ever vomitted. But then again, there's something called 'silent reflux'.

So I'm hoping, once and for all, we'll have answers to the mystery of whether she really has acid backing up or not, at any point in a day.

With the results, we can then either wean down the Omeprazole, or increase it. I'm hoping for the former of course.

Let's see.

23 September 2011

Vera Meets Vera



Some moments in life you never thought could ever happen. For me, this is one of them.

You're looking at two Trisomy 18 babes, both named Vera, living in Singapore, on the same bed.

Vera's parents contacted me some time after little Vera was born. It was unbelievable that we live just 20 minutes from each other.

I remember when our Vera was small too, and we took pictures like there was no tomorrow. Marking every month with cake and candles. Seeing other families cherish their fragile ones the same way brings back bittersweet memories.


19 September 2011

I Remember


I've been thinking long and hard about writing this post, and postponing it in the process.

Because the subject is one that 'haunts' every Trisomy parent, even if their child is stable and 'doing well'.

In the past 2 years, four of the children whose lives I have been following through blogs, have died.

Some of their mothers have been a source of comfort and support in our journey with Vera, some I know less well.

It doesn't matter that I have never met them, or that most live on the other side of the earth. Because of the intimacy of the internet, I feel their pain and heartache through their words.

Over time, I'd gotten into the habit of looking forward to posts from them, just to know how the kids are doing, if things are going alright.

And now, posts are few and far between. It is inevitable and I completely understand.

I sometimes wonder too, if I will lose the will to write, or need to write, without Vera around.

I cannot bear to take the blogs off my list. So I've created a new list, 'I Remember'.

For how can I ever forget following their journeys of fighting against frailty, hoping against hope and most of all, loving their child completely, tubes, IV lines and all.

16 September 2011

Courage

People tell me I am strong for surviving the after-birth ordeal of having a special child.

But I can tell you that the truly brave are the women who choose to continue with their pregnancy, knowing full well they are carrying a special child, at an early point where they have the chance to abort.

It is a quiet courage that has nothing to do with bravado, and everything to do with sheer faith and belief in the sanctity of life.

It is a mother fighting against all the voices telling her "abort! abort! don't let your baby suffer!" and her own uncertainties about every step ahead, knowing deep inside that she needs to give that grain of life at least the chance to decide it's own path - however long or short it may be. It is total respect for life.

While the world around her - doctors, concerned friends and relatives, medical statistics - may point to the dire prognosis and make her feel as though she is making a grave mistake, she has to, despite her own fears, soldier on blind into the unknown with the life inside her, because God has made her, by nature, protector of that life. It is a role entrenched into the DNA of a mother.

So to all the mothers who chose or choose to carry a sick baby, especially a Trisomy 18 baby, to term, this is my humble salute to you. Jill. Christine. And many other women among us.

It is courage more worthy of celebration than any battle fought and won.

15 September 2011

Retarded


Retarded. I remember saying that word when I was young. I learnt it in school. The kids use it jokingly to refer to idiotic things that someone does.

Today, it's not so funny anymore. One day, some kid may ask Daen if his sister is retarded. Kids, like me then, who don't know any better.

He may ask me what should he say. When the time comes, this video will surely come in handy.

Please help this video go viral, or share it with your children. For Vera's sake and all those like her.



11 September 2011

Piano Playing


video

Tapping is something Vera does well. So mummy got her a piano toy, a second-hand find. The keys are within easy reach of her tiny hands. And the sound of the notes seem to illicit good response from her.

06 September 2011

Daen's Friends


Friends. That's what he calls them. All the children in this library book have Down Syndrome, and he absolutely adores them.

This girl here never fails to make him break into a smile.


I'm thinking, libraries should have much more of such books, so children learn from a young age about kids who are different from them and need extra help with everyday living. It should not be a rare book find.

I will try buy some of these books from Amazon to keep, they can help to educate Daen and kids who visit us.

I don't remember ever learning or hearing about special needs kids in my young, formative years. I didn't even know they existed.

Changes in societal attitudes stand the best chance of being changed through the very young.