The earlier years - feeding

It was only a few months ago that I realised, upon reading articles on CP kids, that feeding is usually an issue. Had I known from the start, I would have been less stressed out by the difficulty we faced with feeding him.

He would vomit very easily. We thought it was GERD, or too much gass, or a spinchter muscle problem, but was not quite sure. His peaditrician said it wasn't GERD, but I until today, suspect it was a mild version of it. He does until today have quite a lot of flatulence. As a baby, we rubbed the legendary Yu Yee oil on his tummy, but it was of limited help.

Friends and relatives would give their advice, most of which I would have tried but didn't make feeding him easier.

It did though make me feel very very very guilty, cos it's such a basic thing for a mother to feed her baby and I couldn't do it! In the end, my helper was the one feeding him and has done so until today.

I was very frustrated and an emotional wreck over the feeding. I was very worried he wasn't getting enough nutrients, not enough liquds (risk of dehydration). I would record down how many ounces he drank, at what times, when he vomitted, roughly how much he expelled etc. On bad days, I would check his fontanelle, eyes and diaper (for signs of dehydration).

I didn't know back then that it's due to his CP. His diagnosis of CP came only when he was 2yrs 8mths old and it was only about a year after that I read about feeding issues for CP kids.

Eventually, and very very slowly, and through painful trials and errors, we came up with a very strictly timed feeding schedule. He had to be fed a certain number of ounces at specific times, and we could only vary from that specified time by 10min or so. That way, his feeds managed to stay down, most of the time.

That was when he was on pure liquid (milk). Needless to say, weaning him onto solids was another long trial and error process! 

Now he eats well (compared to how we started off). He loves homemade pizza, spaghetti, cous cous, pasta bake, KFC (sigh!), burger, beef ball noodles, nasi lemak (without nuts, bilis, sambal), roti telur. His portion is a lot less than his peers (maybe 75-50% less), so we still top up with Pediasure milk. He gets tired from chewing quickly so we give hard and dry items at the start of the meal.

Much progress has been made on what he can eat but he still has some oral sensitivities in relation to food for e.g. doesnt like ice cream (cold).