Lorenza & Eliza: Celebrating the season the tube fed way

Lorenza shares her tips and tricks for how to include your tube fed child in the food orientated festive celebrations.

This article shares Lorenza and Eliza’s experience of tube feeding under their individual care plan given by a healthcare professional. Please don’t change a care plan without speaking to a dietitian. All views expressed belong to Lorenza and Eliza, and do not necessarily reflect those of Talking Tube Feeding.

The festive period is fast approaching, and it is very difficult to imagine Christmas without thinking of all the wonderful food that comes with it. This time of year can be challenging for many families, even more so for tube feeding families.

I wanted to share a few things I’ve learned over the years that have helped make Eliza's Christmas much more enjoyable and inclusive. Hopefully you find something below that could also work for you and your family.

Let's talk advent calendars:

Eliza likes an alternative to the old-fashioned chocolate advent calendar. We have had various advent calendars from books, toys, sensory toys and daily activities. For Eliza, chocolate/food doesn't have the same excitement, so these alternative calendars are a great way for her to still feel included in the advent tradition, but without the expectation to eat.

Nothing says Christmas like the smell of baking:

Eliza can't eat any of the treats she makes, as she is currently nil by mouth , but baking gives her a strong connection to food. For lots of children, baking with their family is one of their favourite things to do in the holidays and Eliza is no different! We have lots of fun making strawberry Santas, Christmas cookies, gingerbread men and mince pies. It's important for her to still feel included in these family traditions. We all remember baking as a child with our families; the only part we don’t have a memory of is how the cakes tasted.

Keep calm and get your hot chocolate on:

Eliza gets to enjoy a hot chocolate this Christmas safely, thanks to Biozoon AIR with Flavour (suggested by Eliza’s dietitian). A sachet which can be mixed with your chosen flavoured liquid and aerated with micro air bubbles to create a lightweight airy foam which can be spooned into the mouth and disappears leaving no liquid or solids in the mouth and no need to swallow.

AIR with Flavour gives Eliza (who is unable to eat and drink normally) the ability to experience taste again , by creating light airy foams. Not only can Eliza enjoy the experience orally, but we will also be spending many evenings making homemade hot chocolate that her dietitian has said is suitable for her blended diet.

If you're considering blending for the first time please consult your child's medical team before starting & check out some of the tasty recipes on the Talking Tube Feeding website.

Homemade Hot Chocolate recipe we use:

250ml whole milk
1 tablespoons cocoa
25g dark chocolate
1 tablespoon double cream

Time for the main event:

Family gatherings are often centred around large meals which can be challenging for us. I think as a parent our first instinct is to shelter our children away from food and gatherings that include food, but it’s important to remember that mealtimes are much more than just eating food. It's the social aspect that comes with mealtimes that is so important for our children to still be included in.

There have been Christmases where Eliza has been able to enjoy tasters. If your child can, I would strongly recommend as many tasters as possible throughout the meal. This year is a little different for us as a family, as this is the first year Eliza is nil by mouth, so tasters are not an option. This has been a difficult transition for Eliza and the family to adjust to.

I always bring activities to the table that we can do as a family such as card games, magazines, Christmas activity booklets and toys. An iPad is also sometimes included at the dinner table – a win if this makes your child happy.

There are mealtimes where Eliza can become distressed and wants to enjoy tasting food with the family - be prepared for these difficult moments. Explain to your child that they need to be fed through this tube as their tummy isn't working the way ours does. I find that straight talking honesty, and using simple language that Eliza will understand, can make it easier. Also, be prepared for if your child would like to come away from the table.

Everybody's Christmas looks different and that is ok, tubie families are no different. If you are in a position to blend your Christmas dinner, I feel this is a wonderful way to make your child feel included. Eliza gets so much enjoyment out of knowing her blend is what we are eating. She likes to be involved in her blend process from start to finish. She enjoys helping with the food preparation, and this is a great time to educate her around the different ingredients.