Alish’s Journey | Born Sept 2018

Khalish Edrian is born with full term 40 weeks and 1 day on 28 September 2018 via vaginal birth. Birth weight 3.04kg . He is very healthy baby with no prenatal and birthing complications. He is my first born. On the first three months old I notice he had a very head lag and struggle to gain weight . After 4 months he can turn one side but still cant support his head. This is the beginning of our journey.

He starts his physiotheraphy and occupational therapy since 8 months old but barely do anything because he always sleep when we arrived. He always attracted to red light when he was a baby. We have been wrongly diagnosed with multiple diagnosis such craniosynotosis , microcephaly and spastic quadriplegic cerebral palsy . As the time goes by, we have done multiple test suggested by his pediatrician . The MRI , CT scan , blood test, chromosome test , hearing and ophthalmologist all come back normal . He also been diagnosed with global development delay.

When he turned one year old , he developing a scoliosis and torticollis. He also have very bad gerd and reflux . He have been diagnosed Baker-Gordon syndrome at the age 3 years old. He has hypotonia , scoliosis , cortical vision impairment , torticollis ,GDD, and he always bites his hand .

Today, he almost 5 years old , he take omeporazole and domperidone for gerd and reflux . He can eat blended food orally, doesn’t have problem with swallowing but he still cant chew . He have the peg tube for milk to help him gain his weight . He take lactulose everyday to help with his constipation and enema once every two days. He do physio theraphy almost everyday . His speech and occupational therapy every month. He love to giggles and very cheerful boy . His trunk control is getting better by days .