24 February 2014

Vera is 6

We had a small gathering with close family, in contrast to the big do last year.
How do we know Vera was excited? Well, she slept at 4am that night!

Daen's Birthday wish for Vera: "I wish Chea Chea can learn to eat food." Unprompted.

18 February 2014

A Good 2013

I did a quick check and found that there were fewer posts in 2013 compared to 2012.

It's a good thing. It just means that things are going well with Vera, so I have less drama to blog about. 

In 2013, she had 2 hospital stays - one in June and another in December - both for gastro-enterological infection, with prolonged bouts of Diarrhea.

So far we are averaging 2 hospital stays a year, so I'd say she's doing alright. 

Here are some updates that we are very thankful for: 

1) Fits: Vera's myoclonic jerks (fits) have not resurfaced since September 2012, when she was put on fit medication Epilim. The course of treatment is 2 years, so by September 2014 if she stays fit-free, we can be on our way to weaning off the medication. 

2) Breathing: Vera's biPAP breathing requirement setting has remained largely the same. Results from the sleep study done end of 2012 are out and her requirement is 15/5. This is lower than the 15/7 she is currently on. This is the first time the settings have gone down instead of an expected increase. This is a reassurance that she is well supported for her breathing during sleep, or that she is growing stronger and doing more of the breathing work herself.

3) Gripping: Vera has starting to grip simple objects with her right hand. She has gradually become more open to holding things, even if it is for a few seconds. 

4) Kicking: She has discovered the joy of kicking, and loves it best when in the pool. Feeling her move so freely and joyfully in the water makes me wish I could bring her swimming every day. 

5) Visiting: We brought her out to more CNY house parties this year. When she was young, she hardly visited, for fear of infection. We're happy that she's stayed healthy throughout the festive period. 

So 2014, please be good to us. To Vera's fans who have been following us over the years, you have a good 2014 too!

Giving Her a Shock

Daen has found a way to connect with Vera: By giving her a shock.

Besides talking and singing to her just like we do, he discovered that by making a loud sound, she'll jump. He's thrilled to get a response from her.

While we try to discourage him, it's sweet to see him wanting to play with her. She's also now very interested in his antics. She'll keep her eyes peeled on him whenever he comes close. Even I have become her second choice for entertainment.

07 February 2014

Happy Lunar New Year 2014

Double Happiness - Leona and Vera, our Trisomy 18 miracles.
We visited Baby Leona during the Lunar New Year. She is growing well, has great eye tracking, and has passed her hearing test. What joy it was to be able to carry her for the first time. We know how precious the moment is because of how few of us there are. While others wish to "huat ah!" (make money) during this season, all we hope for is health for our babies.