Who isn't so little anymore. He is a boy now, despite the small size. Can you believe it 5 years old and still 11kg? But what to do. Pediatrician says we can do only so much, and his lungs and heart will forever be doing more work than usual considering his right lung is very small. The extra work for lungs and heart is needed to ensure sufficient oxygenation for the body. Unless he can eat double, he will always be small and petite. We call him 'Cili padi', the tiny spicy chilli.
Good news is he will rarely be fat. Talking about fat, I always, always, wish that I can transfer some fat to him to haha. 5 years ago today, we were told he might not make it because right CDH (congenital diaphragmatic hernia) is more rare than left and it is affecting the bigger lung. Hernia repair surgery gave him 50% chance of survival.
We were there to witness how he fought for his life. Even with infection which caused his lungs to collapse (we almost lost him), he managed to pick it up from where he was. Thanks to the doctors and nurses too, they tried their best, regulating the numbers every single moment.
Today, he is still experiencing the so-called lifelong complication due to surgeries — hernia repair, fundoplication and gastrostomy — but we are learning to cope when the storm hits us. While we wish everyday will be bed of roses without thorns, thorns do exist. We don't have it together all the time, but we sure do treasure every moments. Everyday is a gift itself. We give thanks for that.
We learn from Jansen to be joyful and to be playful all the time despite pain. He is picking up in his pain threshold too. I guess for a child who experienced pain since baby, pain will be nothing to him one day.
Okay, I do not want this to be a lecture. Haha. Just my own blog to remember this boy reaches 5 years old with us. We could not be more proud to be his parents.
