Goodbye Feeding Tube List

Yesterday we travelled the four hour round trip to Sheffield Children’s Hospital.

It is an appointment we’ve both dreaded and yet waited for, for the past few months.

We’d been warned at our last consultant’s appointment that this would mark the start of the Lion’s feeding tube journey. So even though he’s been making improvements it was with trepidation that we stepped through the door.

Weight gain is still somewhat sporadic and allergies are rife.

He had another flare up at the weekend so it now looks like in addition to dairy and soya there are other things we need to cut. He eats for the Other Half (mostly), but for me much less so. We didn’t know how much progress would be enough.

Number Two did his usual charming of the nursing staff.

Impeccable behaviour – even during the undressing, dressing phase required for weighing. His smile was in full force. He didn’t even cry when they took blood – though admittedly the nurse doing it was incredible.

By the time we left he had kisses blown, lots of waves and a whole load of love.

Even better though when he was weighed, he had his best weight gain ever. We allowed ourselves to hope and had a little cheer.

Maybe we could breathe.

Luckily the consultant was as delighted as we were. He’s agreed that for now we can watch and monitor, he’s hopeful he won’t need the tube.

There are days – yesterday was one – when food is still hard.

There are tears, ours and his as we battle each spoon. But looking back at the big picture, always helps.

If someone had told us two months ago, that there would be days he would eat, we would have been happy. More than happy.

We would have been delighted.

And when things are not going well, that is what I need to focus on. Progress may not always be as fast as we would like. I would love food to be a pleasure – even when we’re in the house.

But one day we’ll get there.

He’s done it before. He can do it again.

This is the time to hope.

And I intend to make the most of it!

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