28 June 2014

Gripping and Holding Better

Hand control has improved
Vera never fails to surprise us. Spending some time with her since it's the June school holidays, I see that she has improved in her willingness to hold things. This is very heartening. Especially for the ball - she used to resist it because it was round and hard to hold.

We are very proud of her.

26 June 2014

Facebook Support

What would I do without Facebook support groups?
I am in one for Trisomy 18 and one for Juvenile idiopathic arthritis.
Both are based in the US. And I am lucky they are open to people outside of it seeking support.

17 June 2014

Whisper Soft Mask

The masks I ordered online have arrived.
The closest fit is an Extra Large nasal mask called Whisper Soft.

However it is far from "whisper soft". It has high leakage and Beth who sleeps with Vera is finding it hard to rest with the hissing sound all night. Even then, it is not going to fit for long and there is no next size up.

02 June 2014


Vera is having a bad tummy rash. To prevent her from scratching, we put a tummy binder over it. That made it worse.
We've brought her to the National Skin Centre. A quick skin sample test confirmed that it wasn't fungal or scabies.

Hope this steroidal cream works and we can stop splinting her hands.

Daen Helps Out

Daen helping Vera put on her splint. He wants to feed her too. We said when he is a little older.