A walk in the (West Coast) Park

Did this draft in July but forgot to post it. This park visit was done 22nd July 2013. 

A Sunday noon and it's all fine weather. Nothing better then going out for a walk in the late afternoon. Mr. Sun was shining down. It was a beautiful afternoon. We decided on West Coast Park. A little far from our place but it gives Kaelyn some time to nap in the car.

The park was filled with activities from park goers. Kite flying, ultimate frisbee. With the side flaps down, We think Kaelyn enjoyed the sights.

Her cousin Issac came along too. I think Kaelyn enjoyed the company of her dear cousin. She just brightens up whenever we get that boy to give her a kiss or hug.

No pictures of the beautiful day. The photographer was too absorbed in his own walk :P

Project GIVE tea party

We were invited to the Project Smile Tea Party on the 6th Of July held at the Toa Payoh Central Community Club. This was a tea party open for the kids and their family under the KKH Homecare.

Doing groceries @ Changi city point

Last Sunday, we were preparing for a steamboat with some friends over our place. So we had to go do groceries. Wife stated this was a good time to bring Kaelyn out as the past week she has been cooped up at home because of the bad haze going on around singapore.

I am adverse to bringing her out to shopping malls as I am afraid how easy virus can be passed in such closed up areas and with crowds. But seeing that the time was earlier in the day, I am game for it.

So we brought her out to Changi City Point. Bad start. We forgot her stroller's undercarriage basket. This is used to carry her Bipap and the back up battery. We almost wanted to turn back home. But we decided to lie Kaelyn on the other side of the stroller and squeeze the Bipap with her legs. Anyway she will have a better view of the surrounding in the stroller this way. We kept the oximeter away in the bag as there was no real estate to hang or place it. We just monitor her facial expression.

We wanted to have our breakfast too so it restricted our choices of eateries and seats. Thankfully we got a seat just at the entrance of the eatery, so the space for her bigger than usual stroller was sufficient in this case.

Kaelyn was in good mood. Maybe she just felt "YEEESSSSS!!! OUT OF THE HOUSE!!!" kind of feeling. As we did our groceries, she waved hi to a staff who was beside her arranging the shelves. For the first time other then at the hospital, a man came up to me just asked me about how is her condition and stuff like this. She too, gave this man her best wave of hello, goodbyes and smiles all around.

Feels kind of weird to have someone come up to you to ask about her condition. Maybe that's another reason I keep her away from the mall.

Just a picture from today. No smiles at this point of time as she is nearing her nap time.

A year since we knew

It's been about a year since we knew about Kaelyn's underlying condition of Spinal Muscular Atrophy (SMA). When we knew about the full extent of what the disorder would do to Kaelyn, it seems like the world crumbled down. We never felt so  lost and helpless. If I break a leg, I know I can put a cast over the leg, rest and the bones would heal and my muscles would build up strength if i exercise it.