Pinnacle@duxton walk walk

It seems like a nice day to bring Kaelyn out for a walk. We had planned to bring her to the roof garden on the 50th level of the pinnacle @ duxton for a walk. There was a slight drizzle while on the way there, threatening to spoil the day. But thankfully it stopped and the ground was not wet (dried up pretty quick plus just a short while of drizzle only)

I think it's a good day for Kaelyn. She hasn't been outdoors as it rained during her park time in the late afternoon a few times in the week. And yesterday as she refused to take a nap, we didn't bring her out.

Her nap times are getting lesser. She gets tired but refuses to go to sleep in the late afternoon, and choosing the inopportune times to fall alseep, such as during her chest physio, which is about an hour and half away from her normal bed time. The thumping probably comforts her, even though she has been rejecting pat pats while bed time.

Also the past Sunday have made us worried as she vomited twice in a day last week. 

Home care session (23/08) and reflux issues

Kaelyn measured in at 10kg++ and 81cm in length. Not much weight increase this time round so feeding stays the same. An increase of about 2.5cm in length/height.

She got to try out the cough assist this time round as we requested for it previously. We only tried out a few sets at +-10 pressure settings. This is a very low setting. I guess they have their concerns as I think KKH is trying out the cough assist machine on such a young patient (Kaelyn is 18 months old) for the first time.

I think there was a positive outcome as her SPO2 increase from her average of 98 to 99-100. I shall give it a benefit of doubt that it is the cough assist machine working.

The next time round in hospital would be for her PEG procedure. I really can't wait for this actually as there is a reflux issue surfacing now. Recently Kaelyn had reflux again. This time while suctioning for her. It is worrying. I will try to schedule it earlier if possible.

Vomit episode

This afternoon Kaelyn vomited. Thankfully it didn't seem to aspirate into or aspirate enough into the lungs for her to cause any collapse of her lungs.

She desat abit. Thankfully we were around her when it happen so we could do something immediately. I performed suction for her while my helper turned on the oxygen supply immediately.

I think we fed a little too much too fast. It was some fruit purée through her NG tube. But it happen during the feeding. It only happened awhile later when I propped her up and then she started to vomit.

Best not to be too enthusiastic with the additional feeding next time round. Although small amount of food but her underlying condition leads to weak muscles, including those of the sphincter leading to her stomach, this disabling her to hold back food in her stomach. 

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.