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.

 

Campaign Disrupted

*UPDATE*

PayPal has kindly agree to release the funds raised as an exception.

We are thankful for that!

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There has been an unfortunate twist to our crowd-funding campaign.

PayPal has emailed to inform that they will terminate our account as the collection of funds through PayPal is against their policies. Indiegogo has offered PayPal as payment gateway nonetheless (This really needs to be sorted out!).

Funds raised as of today via PayPal will be rejected. As for funds raised prior will also be locked until further notice by PayPal. As advised, probably requires another 180 days before they will release the funds.

Hence, I urge kind funders to visit our blog for alternative options to help.

Thank you all for your understanding.

We will provide an update on case with PayPal when we have more information.

2D1N Stay

Today we checked in to 'Hotel KKH' for our 1 night 'vacation' stay again. C came in for a routine procedure - undergoing his 2nd sleep test this year. The recent one was done in February. Purpose is to determine if the current BIPAP settings serve him well, otherwise settings need to be adjusted to ensure that he breathes well.

As usual C cried whenever anyone came near him. A phobia he developed over last few admissions. These were taken during the preparation process. Needed to be all wired up - legs, body and head so as to take readings throughout the night while he sleeps.

C has grown heavier (from 9.2kg to 9.5kg. He's a very slow weight gainer) and lankier. This time I did not carry him while wiring in progress. All went well and he settled down a whole lot faster than last time (previously he cried for 1.5hr straight before dozing off to sleep).

I hope he fares well for the test. It will be encouraging to know that his lungs are still functioning well and he is maintaining his oxygen level at healthy level. Will know the results soon. At least I will find out from the tech how he does tomorrow.

All I Want For Christmas

As C gets older, he is more aware of things around him. He is constantly drawn by new objects and demands to check them out to satisfy his curiosity. His mind needs stimulation and he is hungry for new knowledge and skills.

Problem is, his physical disability is a hindrance to his exploration. He requires help retrieving objects, he needs support when sitting, he needs to be carried around in order to explore, he needs someone to hold big heavy objects for him etc etc etc. Simply put, C needs me to be there for him, to act as his hands and legs. As much as I can help, I cannot dedicate all my time to him. There is a limitation to my physical capabilities as well.

Therefore, we are hoping to raise funds for a special tomato chair to meet his needs.

Check out the campaign below for more details.