28 April 2011

She Continues To Improve


Step by step, she improves. First, 2 hands on the table. Now, 2 hands on her lap. I believe she'll raise those hands one day.

22 April 2011

Mickey Feedback 1

Five months after we've been on the Mickey and I must say I'm so glad we made the switch.

The cons of the Mickey proved to be unfounded:

1) The protrusion does not interfere with Vera rolling onto her tummy;

2) It hasn't popped out on us, but we got a new one at 4 months, because some suspension medication caused some leakage (but nothing as flowing as the Bard)

3) The length of the tubing is alright for feeding, we just watch for her hands.

Changing it was such a breeze - Vera didn't even feel a thing. Mickey wins hands down!

How To Live

Some time ago I watched a documentary about the separation of a pair of 3-year-old conjoined twins - joined at the head.

Doctors had initially predicted at birth they would only live for weeks, but they defied the odds. Learning even to walk, one in front of the other.

Their mother told the interviewer:

"They want to live. They want to show us...how to live."

21 April 2011

Back Home

Turns out it's a viral infection and not, thank goodness, Pneumonia.

Sick of lying down all the time, Vera tries to
get some workout done in the hospital bed.

After admitting her last Thursday upon a fever spike and much suctioning and breathing treatment, we're home on Day 6.

The good news:

1) She's finally got her flu jab - I'm so looking forward to a break from infection!
2) Doctors have finally ordered mucus medication for her - it has to be imported specially from the States and will take two weeks to arrive. (It's called Glycopyrrolate - anyone has used this before?)
3) She's finally strong enough to pull herself up just gripping onto our fingers!

Looking forward to sunny days ahead : )

14 April 2011

Sick Again

Even before her secretions have a chance to fully go away, they're back in full force again. Yet another bout of infection is upon her.

I feel defeated. Ready to give up.

I was so looking forward to a suctioning break (I have been suctioning since February.)

There goes my plans to (finally) start some work, or take up a course. Maybe those have to be shelved for good.

We're on standby for fever now. I feel like a boxer, knocked down before I can stand up again.

This Trisomy journey is so so trying.

05 April 2011

3 Years Old: Developmental Update

When Vera turned three, she emerged from her cocoon and became a butterfly.

We thought her long-running illnesses would set her back in her development. But the girl has proven us wrong and miraculously made strides in various areas, which really baffles us!

Here's what she's been up to:



1) Improved grip - Her fingers have gotten stronger. Previously, she would hold the Ark Probe to her mouth only if I held it in her hand. Now, she refuses to let go of it, and 'brushes' her teeth rigorously with it for up to 10 minutes. In fact, she will resist if I try to pry the Ark Probe from her fingers!

2) Sitting - She is now able to support herself with her hands and sit independently for about 5 minutes. Her head tilts back less now.



3) Tripod Sitting - She is now very steady in tripod position and can do it for about 10-15 minutes. (Longer if she's entertained.)



4) Pulling up - This really amazes me. Her forearms have gotten stronger. Nowadays, she pulls herself up into a sitting position once you hold her hands! She's so determined to get up, and so pleased when she's done it. We've been doing this with her every day now, and I bet soon she'll be able to pull up just by gripping our fingers.



5) Extremely 'Talkative' - She turned three and found her voice. Nowadays, she will complain throughout the evening non-stop. More if her nose is stuffed with mucus.

It is said that the first 3 years are when they make the most progress. We are seeing the rewards of our consistent efforts at therapy, and I'm happy she's improved this much during this time.

I look at my chubby, cheesy smiley pumpkin and feel so thankful to have her as she is.

02 April 2011

Healing

The medication seems to have controlled the outbreak. What a relief. Vera is bored from being quarantined in her room, so we brought her to the newly-opened Punggol Riverside Promenade for some fresh air.

Daen goes home (from his park visit) for dinner, and it's Vera's turn.

How she loves being outdoors now. None of the incessant complaining noises (oh yes she makes A LOT of noise now when no one keeps her company).

And how I love bringing her here. It's great to have a river with grassland and birds just minutes' walk from where we live.