21 July 2013

Leona is ONE

Today we share the joy of another Trisomy 18 family reaching the Big One with their daughter Leona.

For Trisomy 18 parents, this milestone is extra meaningful simply because the medical literature tells us that 90% do not make it to their first birthday. So in our hearts, it is as if our T18 kids who do, have just graduated in the top 10 percentile.

The little lioness Leona is ONE!!!
Living a miracle these two!
A wonderful surprise, Leona's paed who is also Vera's ex-paed
drops by to share the joy. We love doctors who love our children!

17 July 2013

School Workout

More standing time, to get Vera used to bearing weight on her feet.
It's the second half of 2013 already and Vera is back into the swing of things at school.

PT prescribes more weight bearing on her feet and hands.

Supporting her from behind and shift weight from one foot to the other.
Lots of resistance from the girl on this one!
Also curling her inwards to stretch out her spine, as she is always arching backwards.

Getting her to kick one foot at a time.

Unlike in 2012, where she frequently complained during PT sessions, she's been pliant and cooperative this year. She seems to try hard to do what's required. I think her core strength has helped in this respect. We are all very happy and proud of the progress she is making.

05 July 2013

Making a Smile

Caught her pulling back her mouth to make a smile : )

Vera can smile spontaneously, but a few days ago, we actually caught her practising how to 'make' a smile.

Every time she shows up some new trick or 'in thing', we are filled with a mixture of surprise, amusement, pride and pure joy.

It is clear to us, that she wants to learn, and could probably be trying to imitate our mouth movements, since she enjoys staring and tracking our faces all the time.

It is also clear that she is responding more and more to different sounds we make - animal sounds, sirens, - her face lights up.

This a girl with moderate hearing in only one ear, and moderate vision in only one eye. Her good ear and good eye must be working doubly hard!

She continues to amaze us.

P.S. The haze has abated, thankfully! We are keeping our fingers crossed it stays away over the next few months.

Also thanks Cathy and Susan for checking in ever so faithfully on Vera, it means a lot to us!