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.

Family portrait finally done

We have been wanting to get a family portrait done but have been hesitating. Mostly because we are unsure of the condition we are going to shoot and whether the photographer would be understanding of our K's need.

After the rare disease day 2014, RDSS helped arranged family portrait sessions for her members with Mr. Lawrence Loh of Lawrence Photography 

What we expected was a single photographer who would come in by himself. We are in fact very fine and was expecting only a photographer turning up. We were very appreciative of the photographer's effort to come volunteer and to fulfill one of the things we had wished to do with K.

But no, he had an assistant, make up artist and bodyguard (kidding. That's the boyfriend of the makeup artist). They lugged photography equipments and quite a hefty makeup kit. He had to set up his light boxes, light check, make up for us, just like those photography studio.

Mummy and daddy got their photos taken too. It was kind of awkward. It seems like we haven't really took a photo together for a long time. Made me laugh as I think back about it. 

This one, we are told to form a heart shape. Sorry our imagination is abit limited. 

It was really beyond my expectations to have a whole team of people sacrificing their time on a weekend to bring a smile to a special kid.

And indeed on that day, they made K feel special. And yes, K gave her smiles...lots of it, to them.

Thank you Mr. Lawrence Loh, Charis, Ling ling and Camus for their time and effort to come to ulu punggol and their fine work.

Books and crafts week

This week we started going through story books with K. We haven't read much books With her. The ipad is always an easier choice. Even at night, we also let her be sometimes and watch or play her ipad. 

During midweek, we started going through her books in the evening to avoid over stimulating her with the TV or ipad. It wasn't enough as her limited books are short, touch and feel stories and not all books pike her interest. We went through it within 2 nights.

Fortunately our National library has a very good source of books for the kids. Me and wife went out to borrow these books. It should be able sustain her ever changing interest for a week or 2.

While I was out for the arvo running some errand. Mum and K collaborated on this Easter bunny basket. The handle's not in yet at the point of photo taken. 

She loves to help out in any way she can, be it holding bits of paper or coloring. We let her help if possible. 

Her mind is only limited by her body. We will just have to work harder and improve our imagination to bring the world to her.

Simple Sundays

Was just looking back at last Sunday. We made a trip to the mall with K. It is not always that we bring her out to the mall but we did that. It's just a simply a trip to the mall to do few things like meeting with dad and mum's friend for lunch, doing groceries.

These simple things in life makes K's usually monotonous week seem more special. She usually is confined at home in bed. So to be able to visit the pet store in the mall or window shopping around the kiddy shops makes the week slightly different in a good way.

Having lunch with daddy and mummy's friends.

Shopping for groceries 

Walking around looking at bunnys and hamsters in the pet shop

Exploring the kids' rides. Although it is pretty difficult to get her to ride now, she enjoys looking at kids playing. But she did have 1 kids ride in one of her hospital stay though, before her medical equipments weighed her down.