Wednesday, August 27, 2014


Just as we thought K is getting well after this episode, we probably lost K for a while yesterday.

She was taking a bath when she couldn't manage her secretion. Sensing problem, my helper accounted that she brought K to her bed to clear her secretions.

Suction was done but very promptly, she became unresponsive, eyes closed.

She had to be resuscitated. We are very thankful for my helper's response. K came around.

When I reached home, I was anxious but glad to hear her cries.

We got Starpals to come have a look to make sure that the lungs are not compromised.

Hours after that episode, she can play with the nurse and doctor who came.

Although well now, she still has got thicker than usual mucus and secretion We think K got choked by a mucus plug that led to this episode.

Mucus plug is the bane of these kids with low lung function as they do not have the strength to swallow or blow out strong enough to expel the secretions.

Thank God Kaelyn is well and good as of now

Monday, August 25, 2014

Low grade fever

Kaelyn suddenly had an onset of fever, thick mucus and secretion in the nose and mouth/throat for the last week.

Thick mucus and secretion is the enemy of patients with low lung function. Suspected culprit was probably a viral infection.

We went though an oxygen tank in half a day. We still have another spare. We are trying our best to not go hospital. 

Thankfully we were able to loan an oxygen concentrator from Starpals to get us through. Only her upper respiratory tract is affected. So long we manage her secretion and mucus well, it should be ok.

Looks like an oxygen concentrator is next on the list.

Saturday, August 2, 2014

Playtime with a new toy drum

With K, playtime is different from other kids. If we want her to engage in some play, we had to assist her. For example, play cooking while she is lying down will require us to hold her hands to move through the motions of say stir frying a toy chicken or some sorts.

Whenever possible, we always try to K to engage playtime with her own strength.

Since we loaned the tumble forms sitter, we usually just have her sitting up, watching the TV or maybe tasting some of the puree we feed her.

Last weekend, grandma bought her a toy drum set after her cousin destroyed hers. We decided to work the sitter with the sling frame while letting play her new drums.

The frames sits over her in the sitter, with the slings supporting her upper limbs from the frame. She gets to swing her arms on her own to bang the drums.

Her grip is weak as she drops her drum stick after swinging it a few times. Had to leverage on the sling to support it.

While sitting up, this little miss busybody also gets to look at our neighbours next block (Full length windows are great!) Her eyes are ever so busy.

She sits up at 45-60 degree angle for about 40 minutes, dropping the angle once to let her clear her secretion when she didn't manage it too well.

When the park downstairs is ready, she can sit up, peer down to look at the activities going on down there if she isn't already there.