A real staycation

Because of Kaelyn's birthday and the intention to celebrate for her, we booked the bungalow chalet down at NSRCC......6 months in advance. Me and my wife may be laid back most times, deep down we are still kind of kiasu (scared to lose out)

Our plan was to stay over for 2 nights. Logistics wise, it is a little headache. I have to move Kaelyn herself, her clothing and diapers, equipment, stroller, milk, medical consumables and her beloved bolster/s. Of course we had our own stuff to bring too. But anyway we made it with everything.

Kaelyn turns 1

Over the weekend, Kaelyn turned 1. She was born on the 16th February a year ago. She was diagnosed with SMA Type 1 when she was 4 months.

She didn't have the opportunity to be able to flip over or sit up by herself. Her respiratory function has also been compromised such that she needs mechanical respiratory assistance

But by God's grace, we made it through the first year.

I am thankful for the friends and family who have been there for Kaelyn and us and wanting to help in whatever ways they can. Be it snacks for us when we were in hospital, wanting to help financially or even just your presence around Kaelyn and us, we appreciate and treasure it dearly.

Happy Birthday Kaelyn!

Candid shots 001

Me and my wife are both working during the day time. So we miss out what goes on at home. We got the iPad Mini not long ago, which was Kaelyn to watch videos on.

Her favourite video? Barney the dinosaur!

Anyway with the built in camera on the iPad, our helper sometimes fiddles around with the camera. We also use it to try out some candid shots when we are just sitting around with her.

Here are some...

Staycation at the hospital

On 2 Friday nights ago, the little girl woke up in the middle of the night a few times looking uncomfortable. She was like this going into Saturday morning.

We were hoping she could sleep it off. But no. Her heart rate were quite high and she has a fever working up. Her sats also wasn't too good. She is struggling to maintain it at a healthy level despite suctioning and O2 being supplied.