Thursday, July 24, 2014

Food for thought and laughter

At the playground, K's playground friend was saying bye bye and that she has to go home and eat her porridge.

My helper turned to K and asked if she too is going home for porridge. K gave a HAHA.

My helper then asked K again if she is having milk for dinner and K replied yes.

Biting and holding up her nibble spoon

I feel glad that she seems like she understood that given her condition, she can't take her food orally.

We give her nibbles of her puree and cut fruits now and then for flavour. But only harder fruits for nibbles (like apple).

She has teeth and and I worry slightly about her chomping off soft fruits like banana :P

She also likes to do her HAHA laughs whenever she thinks something silly is happening around her. When I go "I forgot something", sometimes I will hear this soft HAHA going on behind me.

Her timing is good, i must say. I imagine she could be a comedian when she grows up and can tell jokes.

Sunday, July 20, 2014

What was I thinking about tube feeding

I was sitting down beside K while she was taking her afternoon nap. My helper made her papaya juice.

I fed her slowly using a syringe through her medicine port on her AMT continuous feeding tube. One syringe after another slowly. 6ml by 6ml. The beautiful orange papaya juice flowed slowly as I pushed on the syringe.

After a short while, i started running her milk pump for her normal milk feed.

I sat there smiling. I can hydrate and nourish her even while she is sleeping. The marvels of tube feeding.

Not sure if my thinking is weird. But for K, that's her norm(tube feeding).

Monday, July 14, 2014

Sitting up high at PT

Before we went into the physio session over the weekend, we had a talk with K before we went in. She was always kind of upset at PT and home care sessions.

We told her that we are going to see the PT now. What will you do when you see the therapist? K laughed out loud.

GOOD! We like a brave girl!

Unfortunately her brave facade gave way the moment we wheeled her into the gym. Only after viewing a number of her favourite videos then she stopped fussing.

We tried sitting her up on the tumble forms chair during the session. Usually we don't put her so high up as she may not be able to handle her secretions well enough. But she did managed her secretions while sitting up during the session there. She seem to enjoyed it too.

Sitting her up has the advantages where the lungs will be under lesser pressure as compared to lying down, allowing better gas exchange.

She also has a good view sitting up. Being a really curious (or busybody) girl, she loves this point of view.

We took the offer to loan the chair home. Together with an arm sling, she might have some way of having her own play time with some light weight toys. Let's see if we can work some activities with her on the chair.