Pay It Forward

We made a pledge to offer packed meals for the elderly during our Indiegogo crowd funding campaign. With Lunar New Year round the corner, it's about time we work on that promise.

We were linked up with St. Andrew's Cathedral Home for the Aged about 2 weeks ago. Our initial intention was to provide packed meals but the Home needed help with their weekly groceries so we thought might as well go with what they wanted since we had already set aside the budget for this.

Hubby was given a list of (ahem) 25 items to purchase. 

 

1) Chinese sausage x 4pkts

2) Yam x 4nos

3) Pumpkin x 4nos

4) Turnip x 4nos

5) Bitter gourd x 6nos

6) Eggplants x 8nos

7) Long beans x 2kg

8) Green leafy vegetables x 2kg 

9) Tofu x 10pks

10) Cabbage x 4nos

11) Sambal belachan x 3bots

12) Pineapple x 6nos

13) Ginger x 3kg

14) Tomato x 1kg

15) Chilli padi x 200g

16) Dragonfruit x 15nos

17) Chicken sausage x 8pkts

18) Herbal packet for soup x 10pkts

19) Dried longans x 4pkts

20) Potatoes x 5kg 

21) White fungus x 3pkts

22) Broccoli x 2kg

23) Arrowhead x 2kg

24) Small limes x 2kg

25) Garlic x 3kg

Hubby roped in buddy to help with the logistics. So off they went with the entrusted list this morning (honestly I was a little worried whether these 2 men could do proper marketing lolx). I shared this list for only one purpose - to commend Hubby and Jason for their efforts 'cos the picture below didn't do justice in showing the sheer amount of food these 2 men carried. Hubby said both of them made 3 trips (walking and carrying these food) from wet market to car and 2 trips from car to the Home just because they had to park far away.

 

Anyway the food was delivered along with a red packet so they could purchase the Four Season Lime plants which they wanted but we couldn't manage logistically. Overall I must say it's a wonderful job done!

New Hopes for 2015

Received an email from a concerned fan of C today asking why there had been no update for more than a month. My immediate response to that - GUILT!

Playing keep-up with C's daily routine & therapies in addition to caring for my daughter and keeping this household functional has taken its toll on me. Ending a typical day at 1.30am is a norm and by then, me-time is the only thing I yearned for. The thought of updating this blog came to mind countless times but parking myself at the laptop churning out content is probably the last thing I'm capably of doing.

Having said, this update is long overdue and I still owe credit and thanks to many, it'd better be good. So here goes my first post for 2015 *diligently typing away*...

Time flies.

A year ago, I was thrown into my new role while in a state of disbelief, went through a steep learning curve caring for C and constantly wandering like a lost sheep. It was as if a tornado hit our lives, swept everything within its path and tossed them back mangled and in tatters. It felt like the end of normality.

Life is still tough but better in comparison to prior, given that we are getting the hang of things and our hard work is beginning to pay off. But first, a short recap how 2014 came to a close:

• Had a simple Christmas party joined by family members, Kaelyn & family, Bee Har & camera-man (we've been filming a reality documentary for a while now. the details will come when time is right).
• Did an article with TNP again on Boxing Day to show our gratitude for the lovely people that came into our lives.
• We wrapped up 2014 with an indoor & outdoor family photo-shoot, courtesy of Roy Chuang Productions. BEAUTIFUL isn't it? Roy did a fantastic job in capturing THE moment and transforming these feelings into pictures, locking memories into tangible keepsake. For that, I am very thankful.

 

So coming back to things changing for the better...

 

It was only in recent months C and I established a routine. It took us a year of trial and errors, numerous hospital visits and exploration of options to come to these:

• The monthly 3 to 5 visits to KKH have been drastically cut down to a single consultation at Multi-Disciplinary Clinic every quarter, a new setup initiated by the hospital to better care for neuromuscular patients. C gets to see a team of doctors i.e. neurologists, respiratory physicians, orthopaedic surgeons, physiotherapists, occupational therapists, speech & language therapists in a single session.
• The monthly physiotherapy session at KKH is now replaced by bi-weekly private therapy sessions at home. Being in familiar grounds means greater cooperativeness and that brings about a positive chain reaction - time is better spent on working his muscles (not calming his cries), potentially more room for exploration, increased effectiveness and the results are quite evident. Costly but worth-well.
• Twice monthly visits by StarPals nurse kept things in check. C's health is consistently monitored. Should the need arise, StarPals is able to provide interim support, care and advice thus cutting down on unnecessary trips to A&E.
• Daily half hour leg massage/stretching, 2-3 hours on his AFO, 1 hour physiotherapy exercise, 15-min chest therapy, 5-min on cough assist machine, one-time suctioning before mealtime, half hour on electromagnetic therapy, 2-4 hours sitting upright.... these need to be squeezed in between C's 3-hourly feeds, outdoor walks, naps and shower require utmost discipline and coordination on my part (IMO, this is the most difficult to adhere to and thus took the longest time to form a routine). 
• We have purchased various medical equipment along the way with the latest addition - a cough assist machine to help clear secretions from the lungs. The whole collection assures that we are adequately equipped to care for C on a day-to-day basis. We have also installed a ramp at our doorstep to facilitate C moving in and out of the house.

• Sitting sessions on the tomato chair have to be constructive, productive and educational. These activities mainly involved hands-eyes coordination, stimulation of the mind and cognitive play. Be it painting/drawing, playing on the tablet, cutting dough, stacking blocks or simply self-feeding. One thing for sure, apps are screened and tested by mommy before they are granted a place on the tablet! Below you will get to see some of the progress C made at 22-month-old.



Since C was intubated in October 2014, he has gradually moved from full tube feed to partial oral feed. He has been taking 50-70ml of milk during every milk feed and taking his lunch e.g. 1/4 bowl porridge orally. I have also re-introduced pinky-size baby biscuits into his diet. Previously after being tubed, he could no longer tolerate biscuits and would choke each time eating it. Now he can finish one whole baby biscuits in little pieces.

 

 

Apart from naming colours, vehicles, shapes, fruits and animals, C can do a whole lot more. Below are links to YouTube videos on:

• C naming his vegetables
• C playing tablet. He is good at puzzles, memory and matching games! Previously he was able to do 4 & 8-pieces puzzles. Now he can do 12 to 18-pieces jigsaw puzzles. Give him a tablet and he can switch from app to app, play videos on YouTube and he even knows how to skip the ads!
• C counting from 1 to 10. He also recognises them in written form. Now can count to 13.
• C singing. His favourite song 'The Wheels on the Bus'!
• C on alphabets. Last I checked, he knows 20 out of 26 alphabets. He can name them at random.
• C on sounds recognition. Super adorable isn't it?

Anyone interested in teaching C?? I think he would really enjoy learning and studying.

Christmas Eve

Yes! We have a chair for Christmas!! It arrived on 23 Dec, the best Christmas gift for C ever. Thank you all for making it possible.

Engrossed in his games on tablet

Little boy now spends a fair amount of time on his chair in the day for various activities e.g. drawing, playing games and toys, meals, reading etc.

See how it actually fits in our (very squeezy) room and love the fact that it's slim enough to maneuver to different parts of the house. If you also noticed,  C's head is barely touching the headrest, leaving plenty of room for growth. This chair is definitely going to last us for quite a while.

This year instead of keeping to the usual stay-at-home Christmas, we have decided to throw a small party. Gone is the 1.8 metres tree. I reckoned that it's going to be more of hazard than pretty display. This has thus been replaced by a petite 1.2 metre neat looking one which complements the gingerbread house that I painstakingly painted over the last 2 weeks. Can't wait for the party tomorrow! Will definitely update with more details after the event.

Here's wishing all a blessed Christmas filled with love! Oh yes, C wishes everyone a Merry Christmas too!
(In case it doesn't load, you may view video at http://youtu.be/WwNkSky2Atc)

A Month Full of Love & Sharing

December is my favourite month of the year. It is a month of celebration, sharing of love and gifts. It also marks the end of a long eventful year and the beginning of a brand new, better one (don't we all wish for that huh?). A happening month means more to cover. Therefore, I shall keep my entry short (finger-crossed).

Little C was warded for the 4th time this year on 26 Nov 2014. Oxygen level was low accompanied by a chesty cough and high fever. It was a short 2-day stay but an unforgettable one. I was startled by two familiar voices in the high D ward at 3.30am. For a moment, I thought I was dreaming and disregarded it. Seconds later, I heard a familiar name and the same voices in the background calling out in distress. It was C's pal, Kaelyn, in the same ward just a bed next to us curtains drawn. It was a tense moment, I felt absolutely awful and I wish never to have to go through it again. I was glad Kaelyn and C made it home in full recovery.

Moments after C's story was published in the papers, a NYP student wrote to ECDA on our behalf to find out the possibility of providing an education for C.

Hubby and I saw a high level of maturity, sensibility and initiative in this young man and found his action admirable. We need more like him don't you agree? That will make a lot of difference to this not-so-pretty society I see today.

Meanwhile, we have also received messages from the public offering to help C in unique ways. Some offered to provide free clinic consultation and others healing therapy. A lady wished to dedicate a section in her retail outlet to sell my bento tools/accessories just so I could concentrate on caring for C and  not keep myself busy attending to business queries and sales.

How very thoughtful of these folks!

Their 'loot' - toys, books, stickers and cake

Just last week, a kind gentleman, Mr Loh, took time off work to bring the children Christmas shopping at Toy 'R' Us. Cayla was over the top excited, ran all over the store, grabbed every boxes of toys she fancied >_<|||

Poor daddy mommy were busy distracting her and returning the boxes to their original places. At the end of the day, all I could say is that Mr Loh made the children very happy. They hardly get the chance to do a shopping spree (neither do I hahaha, kiddin').

Been 2 years since we last had a Xmas tree

There were also 2 beautiful ladies, Lynda and Shirley, who came by our place to visit C. They brought me lunch & coffee, presents for the children, books, Christmas tree and accessories. It was our first meeting and I was overwhelmed by their generosity. They stayed to set up the tree and kept C entertained. The finished project - simply beautiful. I even bought a Gingerbread house to complete the look. All I need now is to finish painting the house.

To Mr Loh, Lynda and Shirley, you brought light and love to our home, brought joy and put smiles on our children's faces. We thank you for making a difference to our lives. I hope our relationships will blossom into long-lasting friendships in time to come.


While updating this blog, the funds from Indiegogo campaign has came through.
The breakdown of the total funds raised (all amount quoted in SGD) is as follows:

Indiegogo campaign - $14,288.11
Cheques/bank transfers - $5,610.00
CDA - $1,500.00
Grand total - $21,398.11 (as of 10 Dec 2014)

Here is how we wish to utilise the funds:

Tomato chair - $3,390.00 (still waiting for delivery)
Cough assist machine - $6,527.00 (recommended by therapists during C's hospital stay)
Buggy for Kaelyn - $3,500.00 (to help a fellow RDSS family purchase a machine)
Blessing for Danielle - S$1,000.00 (to help a fellow RDSS family with consumables)
Pledge a meal - $500.00 (this will cater more than 60 packed meals as initially intended)
Remaining funds - $6,481.11 (of which $1,500.00 is in CDA non-withdrawal account)

A heartfelt THANK YOU to all funders! We can never thank you enough.

Finally, a quick update on C's health status. His recent sleep test results came back. Nothing very much conclusive. I was told that his didn't achieve deep sleep at particular BIPAP settings. Tech titrated the settings throughout the night and they went as high as 15/7 (if this even make sense to the general public). C previously was on 12/6 and had increased to 13/7 while in hospital. To keep the story short, doctors would like to increase the settings at a rate C is able to cope with. Therefore they will keep the BIPAP at 13/7. All in all, C seemed to be in good shape for now. Can't wait to celebrate Christmas with my folks!

All So Familiar

We are back (on Monday) from our cruise trip! An energy draining but once in a lifetime outing for the family. No doubt it was tiring for the adults, the children enjoyed it much. C kept asking to go 'gai gai' even after we came back.

There were many first - first time the siblings shared a bed, Cayla's first cruise, first family trip, first travel with machines in tow. All these not possible without special arrangements by Club Rainbow & RDSS. Thank you!

Today also marks the end of our Indiegogo - A Chair for Caelen campaign. It will take another 2 weeks before we get an accurate idea of how much has been raised after the deduction of fees. We will be coming back to that in due course.

Meanwhile C is not doing so well. He has been having this chesty cough for almost a week now. His sats began to drop last night and it does not seem to get better tonight. The oxygen concentrator we have purchased a few months back now parks next to the bed instead of its usual corner. C's O2 at 95% is looking a little bit weak (even with oxygen supply). I guess it's back to the routine of doing chest physio, suctioning, full tube-feeding and round the clock monitoring again.

Hope we will be able to manage this at home and that C gets better soon.

Newspaper Article II

I have received numerous friend requests on Facebook and Google+ as well as emails from the public giving us words of encouragement, well wishes and offers to help in many ways. For that, I would like to say a big 'THANK YOU' to everyone. I have, in fact, replied to many as promptly as I should. I am also aware that some (you know who you are) are still waiting for follow-ups from my end but I haven't, my most sincere apologies.

This week has been hectic as we are in the midst of packing and preparing C's first trip out of Singapore. We will be joining Club Rainbow for a family retreat and will be cruising on Royal Caribbean - Mariner of the Seas. To prep for the trip, I have taken C to the clinic for his flu jab. He is crankier than before due to the jab and teething (again.. this time upper molar) but otherwise his general health seemed to be good for the trip. I, on the other hand, am busy packing for the entire family and IT IS a logistical nightmare. Toys, machines, consumables, medication, bathing chair, luggage for adults, luggage for children, double stroller... the list seemed to go on argh!!! It takes much careful planning to fit everything in the least number of luggage. So please do bear with me, I promise I will revert soon when we returned.

Meanwhile we have done an interview with The New Paper and here is our story featured on 19 Nov 2014. Click to enlarge.


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Newspaper Article

Our recent crowd funding campaign went viral and caught the eyes of the reporters.
Here is C's story featured on 新明日报 (9 Nov 2014). Click to enlarge.