Biting again

Recently K has the habit of putting some things into her mouth again. Why again? Well because as a baby, she already went though the phase of putting her fist, toys, whatever she can get on her hands, into her mouth.

Now she is doing it again, but not fervently, so we are ok with it. 

Through these actions she is doing, at least she is trying to move her arm and put the objects near her mouth or knocking it against her nasal mask. part of the mask is made of hard plastic, so it produces a knocking sound when knocked against her toy.

K's 2nd Birthday-Grateful and thankful

Yesterday we celebrated K's 2nd birthday with a buffet lunch with some friends and relatives. What a U-turn for me. But it's no biggie, just max 40 people.

When Kaelyn was born, I told myself this little girl's birthday celebrations is going to be very simple home affairs. No big celebrations when she doesn't understand a thing going on around I say.

I did it to celebrate a milestone. It is a milestone for K, that is, just to reach the age of 2.

It is not easy for her to reach this age. The prognosis of SMA is not good for her age as 80% pass away before age of 2. 

Portable oximeter

We received a portable oximeter from a friend. We are thankful of the gift. What is even better is that it is same brand as the one we are using at home.

We do not need to source for different sensors. We save cost as we do not need to keep spare of another brand of sensor. it is conveninient as we just need to unplug the sensor and put it into the other oximeter. No unwrapping and wrapping of the tapes over the sensor

When bring Kaelyn out, we can travel lighter. Less worry about breaking her main oximeter when we move her equipment around.

We are thankful for this.

In time for Christmas

It has been about about 4 weeks since Kaelyn was discharged from hospital. She is home and in jolly good spirit. She also had the chance to receive gifts and unwrap presents for Christmas. (Last year Christmas was spent in hospital)

She went in with a high fever and cough. we had to go through a bad episode of having to fight to help K breath and stay alive.

Busy evening fighting

3rd day of her hospitalization today. Yes. k was re-admitted on the Tuesday afternoon. No sign of anything coming. Just coughs and more secretion over the past 2 day and a slight fever coming in the previous day.

Then suddenly she was burning at 40 degree, losing consciousness and life in her eyes. No stroller, no packed bags. We rushed to the hospital with my helper carrying her while mummy standby with the suction machine in the back seat.

Breathe in breathe out

This was the mantra I told K at home when she desat as she chokes on her secretion or gets angry and hold her breath. This was what I told her as I left her for the docs to extubate her. This is the 3rd day after her op. 

The curtains were drawn closed. It reopen 20 minutes later with K on her usual mask. Not only that, they already had done an intubation on the baby on the next bed. 

K's PEG and fundoplication procedure

K lies asleep peacefully, intubated and on painkillers after her PEG and fundoplication procedure as I am typing this beside her bed. She has her bedside buddies with her. All in good hands as you can see.