Day +20: Food, Glorious Food!

Sean started eating again today. Yay!

The whiteboard recording Sean's food and formula intake had been blank for 15 days. We thought it would be a while longer before Sean would accept food again, but today, he surprised us and ate.

Sean ate apple purée for breakfast. Then he had some chicken and sweet corn purée for lunch. Then he had some beef and pumpkin and potato purée for dinner. From having no solids at all for 15 days, to having 3 meals - it was simply amazing.

The last time Sean had any real solid food was on 1 April, the day daylight saving ended. That was the day he was quite unwell, and really refused food. We knew that was going ot happen, so we didn't push him to eat any more food until he was ready. Even today, when we decided it was time to try again, we weren't sure if he was ready to eat food again.

It was such a joy to see Sean's little face light up at the flavours of the food we gave him. Sean had never really been a good eater - since his introduction to solids at the age of 4 months, there may have been a total of 10 weeks when Sean was really interested in eating food, and large amounts of it. Since Sean's diagnosis, he had all but reverted back to really mushy food, almost purée, and this was what we fed him because we knew he would eat it. We were warned by the medical team that Sean may very likely need to relearn how to eat, and so we thought we would start the process today with some apple purée.

We were of the mindset that if Sean started to refuse the food, we would stop, wait a few seconds, then offer the food again. If he continued to eat, then all was well, but if he refused again, then we would stop. We were very careful not to overdo it, as we didn't want Sean to throw up and get upset. So, very tentatively, we gave Sean a spoonful of apple purée. He swirled it around his mouth, and swallowed it. He smiled, and pointed to the tub of apple purée, so we gave him the next spoonful. And another spoonful. And another. Before we knew it, the tub was finished, and Sean had a belly full of apple purée.

120g of apple purée. It might not be much, especially when adults would be able to eat the same amount in 2 big mouthfuls, but to Sean, eating that amount of food was a huge achievement. And we made sure we told every single person who walked through the door of our room.

The same thing happened at lunch. We were prepared for Sean to refuse the food, but slowly, one spoonful at a time, he ate the entire jar of chicken and sweet corn purée. 110g of golden goodness.

And at dinner time, Sean's face lit up when he saw the jar of beef, pumpkin and potato purée. Sean didn't quite finish the jar - he ate all but a teaspoon of the purée, but we were so proud of him for eating so much throughout the day already that we didn't mind him batting the spoon away when he had had enough. We certainly weren't going to force him to eat any more!

The nurses were very impressed, and this was another thing that was going to help us get home sooner rather than later.

Professor Marshall was back as the lead consultant of our team. He came in, all smiles, and told us how happy he was with Sean's progress. He was keen to see Sean weaned off the morphine as soon as possible, so the instructions were to decrease the morphine and leave Sean to adjust to the new lower dosage for a longer period of time, until gradually, his body didn't notice the morphine being taken away. Professor Marshall agreed that Sean was very likely suffering from withdrawal late the night before / early yesterday morning, and apologised for cutting Sean off as abruptly as it was done.

A lot of things needed to be adjusted before we could go home, one of which was Sean's continuous tube feeding. There was no way we could go home with Sean still needing to be fed milk through the tube 24 hours a day, so the plan was to increase Sean's overnight feeds and give him a break during the day. Unfortunately, the initial increase to 60mL per hour was just too much for Sean's belly. Last night, the rate was slowed to 40mL per hour, and Sean had a much better night.

Two things I was sure Sean was going to miss were our gorgeous play therapist Kylie and our lovely music therapist Verena, who came in to play with Sean again today. Sean just shone when the ladies were here, playing music and singing and dancing. Kylie brought some paint with her and we did some more painting, this time on canvas, so we will have something to hang up in Sean's room once we get home.

Home. We are so close now. Keep staying well, little man. Mummy wants to go home soon!