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.

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).

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.

Breezy Sunday picnic

Sunny Sunday afternoon are always good times for picnic. We went down to our usually picnic haunt, East Coast Park.

We sure are happy when we see K just taking in the view, enjoying the breeze, looking at the kids play and asking to go after the doggies.

One day after the BiPap malfunction, it worked absolutely fine. It'd better work until the end of times for the price we paid.

Homecare Tea party 2014

We went for the KKH Homecare the party on Saturday. There were energetic Zumba performances, hand painting and cosplay characters. But we didn't really enjoy the party.

K had a few episode of desat there. Not sure why, but either she she couldn't cope with her secretion at that moment or she got a shock when she saw the masked cosplayers. But we sure made use of and thankful for the ample oxygen tanks around.

After resolving K desat issue, then our vivo BiPap decided to just off itself. We were on 12V external power and have used this setup countless of times. Thankfully after we connected the main AC power, the BiPap got up and working fine, including with the 12v battery, until we were home.

Only took this picture after we reached home. She went to party and got a "tattoo" and rainbow looms. 

PEG button change

Last Friday, K had her replacement of her PEG button in the Children Surgical Centre. The entire thing was over in about a minute.

I feel for K. They really yanked it out and popped in the new button.

I guess it was the way to go. But it done was really fast and clean. I guess it would have hurt for a longer time if you took the time to slowly twist and pull it out.

The area of the button was raw for few days, but expected.

This is the Bard after it was taken out. It's kind of our souvenir.

It was last October when we first had the button done for K. We had the Bard button put in for K at that time.

It was leaky after about 4 months. There was back flow, even 3-4 hours after last feeding. Since recommended time for change is about 6 months, we made an appointment to change the Bard out.

This time, we opted for the AMT Mini ONE Non Balloon.

The only thing about this AMT button is that it is slightly bulkier than the Bard. The Bard has a lower profile compared to the AMT when compared with both the continuous feeding tube inserted.

If you don't like the button/feeding tube combination to look like a small erm...button underneath the shirt, Bard would probably be the way to go.

Let's see how this model of AMT button goes.

Star pals engaged

Recently we engaged the services of star pals. They have a team of doctors, nurses and social workers who can carry out regular home visits of the patients to check on the well being, provide medical treatment or therapy services.

With their services we hope to stay out of the hospital as much as possible. Hospital stays drains the energy out of everyone.

So far they have done an initial and a follow up visits.  To get to know K and her condition, they ask lots of questions about K.

These questions are fine actually. But there are some questions that got me thinking like how's the rate of breathing without the BiPap compared to with it.

It struck me as I realized I haven't been noticing these details about K for quite sometime. Sad to say,we sort of pride ourself on having a mundane life. Because most likely any changes happening to K's health are areas for concern. As I always say to my friends who ask about K, no news is sometimes good news.

Having someone to come in and ask some questions occasionally is good. It serves as a reminder to be more attentive to details even in a lull or in good health.