27 June 2011

Back To School

After a relatively long hiatus, Vera went back to school today. Good thing she did not wake up last night, which guarantees a fairly good day ahead.


She was extremely alert, and excited, probably too excited, so she got tired out and cranky. But overall, she enjoyed the session - I can tell from her roving eyes.

She sat unassisted on the mat for the first time in class.

video

I am so proud of her.

16 June 2011

Babysitter


My 90-year-old granny tires easily nowadays and visits us less frequently. She's stayed over the past few days, and it's so wonderful seeing her with her great grandchildren. I think playing with them tires her out more than usual, in a happy way though. Oh how I wish she could be with us for much much longer.

15 June 2011

Pushing Up

Vera's hands have become stronger. She is now about to push her body up until they are fully straightened.

Through weight management, we have kept her weight the same while she grows in length. She was off the charts for a while, but now she is currently at 100th percentile on the Trisomy 18 weight chart - 25lbs at 3yrs 3mths. I believe this has enabled her to grow out nicely, and also helped her remain active and bear her own weight more comfortably.

Vera at her smiley best.

10 June 2011

Encounters At The Playground

I can tell how society views children like Vera just by bringing her to the playground.

Some kids can be mean.

A 5-year-old boy comes right up and laughs in her face.

"No laughing," I chided him defensively. "If you want to laugh, don't come near here."

He does the same to another special needs boy with cross-eyes, about his age, who also happened to be at the playground.

Two other bigger children, both sisters, come up to Vera and said, "She looks so special". Seeing that they were friendly, I proceeded to tell them about the miracles and obstacles Vera had overcome.

They were filled with awe.

One of them asked their mother to come see.

The mother took one look at Vera and said, "Aiyoh, why like that?" Then hurried her girls along.

Her daughter looked at me and said, "Sorry, auntie."

The girl actually apologised to me on her mother's behalf.

We may be a so-called first-world economy, but alas, no way are we near first-world standards in our attitudes towards those who are different from the norm.

Where I live, some people hurry into lifts and close the doors like they are hitting the panic button. They don't have time to wait for others.

Able-bodied people jostle for the lift with those in prams and wheelchairs, instead of taking the stairs.

It saddens me sometimes.

05 June 2011

Beautiful Baby Ruth

Look at those eyes. So wide and alert.

This is baby Ruth. Another Singaporean baby born with Trisomy 18.

Another fighter who, despite a hole in her heart, and numerous hospital admissions and surgery, has survived for 7 months now.

Her parents are even more amazing. They learnt about her condition at 21 weeks in utero, and bravely chose to give her a shot at life, and let HER decide how long SHE wanted to live. It is the ultimate respect for life. And truly unconditional love.

From a birthweight of 2.1kg (Vera was 1.9kg), baby Ruth is now 5kg. It is the work of the wonderful invention of tube-feeding, impeccable nursing care, doctors and surgeons who go the extra mile, lots of LOVE and a higher power. And of course, Ruth's will to live.

As of now, she is still fighting for her life, awaiting heart surgery.

Please pray for this little baby.

02 June 2011

Survival Statistics

When Vera was about 6 months old, I came across this piece of research findings on survival of Trisomy 18 cases in Japan.

The sentence in bold was what we hung on to:

Abstract

"The prognosis of trisomy 18 is lethal, but recently some long-term survival cases have been recognized. We report here the mortality rate of trisomy 18 based on our hospital data and sporadically published reports in Japan. We collected the 7 previously published reports of mortality and 31 cases from our hospital data with trisomy 18. Our data pool comprised a total of 179 cases of trisomy 18 from 8 institutions. The mortality rates within 24 hours, 7, 28, 60, 180, and 365 days from birth were 14.84% (19/128), 31.01% (40/129), 56.25% (72/128), 64.08% (66/103), 82.17% (106/129), and 90.90% (140/154), respectively. Fourteen of the 154 patients (9.09%) survived for more than 1 year. The Kaplan-Meier survival curves from 78 patients of 5 institutes suggest that trisomy 18 children who have survived over 7 months after birth may have a high probability of long-term survival. We should recognize not only that about 50% of infants with trisomy 18 die within 1 month after birth, but also that about 10% of patients survive over 1 year in Japan. These findings comprise Asia's first clinical statistics concerning trisomy 18, in which the data were collected from multiple institutions. This evidence is valuable in order to perform genetic counseling concerning the natural history of trisomy 18 not only in Japan but also in other countries."

Crew Cut

Vera perspires a lot when she sleeps. This is because she takes more effort to breathe.

The mask headgear adds to the heat. There's usually a pool of sweat on the sheets where her head is.

So I had her hair cut really short this time. Summer is upon us, and the heat will just get worse.

I hesitated about her looking like a boy, and people in the park now ask if I have two boys. But you know, Vera's comfort over-rides everything.

Bath Chairs

Vera has outgrown the bathtub. As she could sit up now, we were looking for a bath solution that would allow her to sit back, but was yet compact enough to fit the shower area.

Pediatric bath chairs for special needs
I found online were priced in the hundreds at the cheapest.

Some examples:

The Dolphin Seat

Rifton Blue Wave

Snug Seat Manatee

Then my friend R recommended this - a beach chair from IKEA. She said another mom had been using it for their special needs daughter.


I told myself, if Vera smiles when she sits in it, I'll get it.

And she did!

It was a very happy S$15 buy.

01 June 2011

Lazy

I'm sorry I've been lazy with the blogging.

I figured that whenever I post that Vera is doing well, our lives "get interesting" again. So I thought I'd lie low and enjoy the peace for a while. It's June, and for the first time in 2011, we're back to "walking" mode. We'd been "running" for 6 months.

Because of that, every day Vera wakes up well fills me with such joy. It is enough just for her to BE well! She doesn't need to do anything more, really.

The little girl thinks otherwise.

She is intent on crunching her stomach muscles to get her back off the backrest as shown.


She's a determined little one.

Thanks for checking in on us. More to share soon.

P.S. The good news is that she's recovered from the mucus such that Dr D says she doesn't have to be put on Glycopyrrolate. We are so thankful.