A New Routine

Jan 2014 - 10 mths old

The first time C visited the Zoo was 1.5 years ago. Too young to remember anything. It was more of a must-visit-the-zoo-before-he-turns-one affair.

Last Saturday, we brought C there again. It was meant to be an educational trip. We thought he would be happy to see and name the animals he came to know through books and YouTube. It was also one of his very few trips out of the house in recent months.

Jun 2015 - 2 yrs old

Having glanced through my blog posts, I realised C had not been in the best of health and it was hard for me to acknowledge that his tiny body was failing him little by little. It was even harder to see how each episode took a toil on his body.

He is now thinner than before as he struggles with his milk feeds. C chokes and coughs bad due to reflux so much so he has problems keeping his milk down. It has also greatly affected his oxygen saturation, its lowest at 80%.

We have thus reduced the volume of each feed and started medication - Domperidone to relieve some of these symptoms but his oxygen saturation did not show much improvements over the last two days. In fact C began to show signs of dehydration - cracked bloody lips, changed in nail colour, tiredness, less urination, increased agitation, weight loss etc.

Hence this afternoon, doctor made the decision to put him on 20-hour continuous feed via milk pump. 100ml of milk is being pumped into his stomach over 4 hours, 5 times a day repeated over the week. In the next 2 days we will review whether continuous feeding benefits/improves C condition.

So far C has responded favourably with his oxygen saturation and heart rate returning to baseline. He no longer coughs as much and low grade fever is gone. With him constantly fed, though at a lower volume than his original daily intake but if well tolerated, we could slowly increase the intake to optimum volume (hopefully to see some weight gain in the near future).

The awful thing about milk pump? Carrying an additional machine plus milk bag around is definitely not too welcoming. It also meant that as long as C is on the pump (regardless of time, be it till 3or 4am), I need to be awake to help untangle the mess while he sleeps because the tube tends to wrap around him when he flip and toss. Not liking it at all for loss sleep.

Finally before I go, a quick update on Cayla's DNA results - she tested negative for SMA but has been recommended to go for therapy/counselling with the psychologist.

If Caelen's diagnosis has affected the adults badly then the impact on the siblings would often be greater as they are not capable of expressing and dealing with complex emotions (e.g. the disappointment of not having an abled brother who could run and play with her; not receiving equal attention as the brother, not understanding the reason why she has been robbed of the love and attention she used to be receiving). Hopefully with professional help, her behavioural and psychological issues can be better managed.

**For those who missed episodes of the 4-Part Documentary Series - 孩子,你慢慢来 Because I Love U, you can watch the videos here**