This in a way sums up our journey with food and feeding Yatish.
It all started with his birth. The maternity nurse realised that no matter what she tried, Yatish was not latching on to my breast and sucking. The only resort left was to express out the breast milk and feed him through the syringe. This was not going to be easy as he was still in the Intensive care which was located on the ground floor and the room allocated to me was on the first floor. Needless to say there were no lifts. The next fifteen days my routine was to express milk every two hours, averaging 12 trips a day, up and down the stairs and make sure the baby was fed.
I cannot overemphasize how my motherly instincts overtook everything. I did not even rest to realise I had just given birth and had gone through painful labour and also needed the rest. I did not even remotely think about it, because I was too busy keeping my baby alive.
Once we came home from the hospital with this scrawny little bundle who weighed about 2 kgs, we had this enormous task ahead of us of not only keeping him alive but nurturing and helping him grow. We slowly transitioned from feeding through the syringe to feeding through the bottle, all the while expressing milk.
But soon the milk dried out and I could no longer express any. We now had to resort to formula milk. With formula milk came a new problem - reflux. It is quite common in babies , as their stomachs are still developing and they may end up "spitting - up" the milk, but with Yatish it lasted a bit longer.
Cerebral palsy can affect the muscles that open and close the mouth, move the lips and tongue. Some of them have difficulty in chewing and swallowing food and drink, a condition known as dysphagia.
Feeding him through the bottle in itself was a skill, you had to control the flow and the angle you fed in order to get the optimum results.
He was about 10 months now, had no neck control and was not putting on much weight. It was time to try some new foods. We started him on baby food, it was a struggle for him to close his mouth and most of the times if we managed few spoons, I would consider it a victory. It was a process of elimination, we tried lots of foods and eliminated lots of them as unsuitable. We went beyond our beliefs and tried things like bone broth.
We had reached a point where we were no longer worried about nutritional, healthy food, our aim was any food. He was painfully underweight and by now he was doing a lot of therapy as well. In order to keep his energy levels , we had make sure he was well fed.
We also realised that he would gag on foods like rice, oats etc. Rice is a staple in Indian food and usually the first choice for babies and kids, but it was not for us.
As you know hunger is a basic instinct and when you are hungry you just need to eat. This is true of anyone. I used this strategy to try new foods, sometimes with great success as he was ready to put in the extra effort.
It was not easy for Yatish to sip on liquids even water and juices. In developed countries they use thickeners to thicken the liquid to a consistency, which makes it easier to sip. Neither was I aware of it nor was I advised by any doctors.
We travelled a lot in auto rickshaws to get to therapies all over the city. The distance between the places and the time needed to travel meant we had eat and drink on the go. I would carry tetrapack juice or juice box and bananas. He would be so thirsty and hungry that he found a way to sip the juice from the juice box initially with some help and later quite efficiently.
As he grew older his palate increased but we still had to stick to familiar foods and consistencies.
When we came to Australia and he started school, as he would be fed in the school, the school Speech therapist wanted to do a meal assessment and she was worried that due to Yatish's dysphagia, there was a high chance of him aspirating on his food. Aspiration is when food or drink enters your airway or lungs by accident. I told her that in 9years of his life he had never aspirated and I never had to admit him to the hospital. But because they have a duty of care and to do right by the child, he got referred to the speech therapist at Royal Children's Hospital to do Barium Swallow test.
Barium Swallow Test
However the Speech therapist at RCH observed him while he ate and drank and ruled out the need to do the test.
We eventually ended up doing a Videofluroscopy. A Videofluoroscopy is a dynamic or moving x-ray of swallowing function from the mouth to the oesophagus. It allows the examination of structures and muscle function in the mouth and the throat during swallowing.
Aspiration was ruled out .
Fast forward to today in spite of all the difficulties in feeding Yatish and the struggle with his muscle tone and his dysphagia, his food palate has increased by leaps and bounds . Apart from his favourite Indian roti and curry, he loves his Japanese Katsu Curry don, Chinese dumplings, Aussie meat pie and not to forget the chocolate mousse and brownies. The sheer joy on his face eating his favourite food makes it all worthwhile.
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