Day 10

I shall start blogging from Day 10 since I may not find time to back track.

This morning Go Go was sent for the MRI tests. He being our strong little fighter, he tolerated the test very well. When we visited him after the MRI, he was sleeping soundly for the whole afternoon, an effect from the sedation which was given.

He is still on the ventilator to help him breathe, and is still on the drip for nutrition. His tummy is still swollen and the "aspirit" from his tummy still showed signs of "dirt" according to the doctors.

My strong fighter has a name now: Nicholas Chang Shi Kang. :) We have finally decided on a name for him. Nicholas - people of victory. We pray that Go Go will fight against this disease and be a strong fighter. Shi Kang - we pray for good health for our little prince.

I saw a note on the desk which indicated that the clinical diagnosis is Spinal Muscular Atrophy. The last few days has been hell for me and my whole family. I am torn between Go Go and Ni Ni and of course Min Min.

I ask myself alot of questions:
- why would God allow this pregnancy for someone who has such difficulty in getting pregnant?
- Why would God help tide us thorough this difficult pregnancy, only to allow us to find out about this disease after Go Go's birth?
- why why why??????? there are lots of whys ...... which I may never have the answer to.

I am secretly so afraid of losing Go Go anytime since the killer for SMA is usually respiratory related problems .... I do not want to have any negative thoughts, but they just keep coming. Are they from the devil? God please have mercy on this poor child...

What if our family never gets the chance to be together?? God please send all these negative thoughts away!

We have requested for Father John-Paul from St Marys to baptise Go Go next Monday 7-Dec.

Today we bounced off the idea of stem cell replacement to the doctors and they did not seem very supportive .... I need to find more information on this.