Feeding therapy - Day 18 (last day)

Wow! Last day in Graz. Back to the big smoke tomorrow ready for Christmas festivities with the family on Sunday. My Dad has kindly offered to collect us from the airport in our car. Mixed emotions about coming home as we're not quite off the tube yet and would probably choose to stay another few weeks if a) it wasn't Christmas b) I had time off work and c) we could afford it! That said we really miss our family and friends back home. Not forgetting Derek and Clive of course (Lilian absolutely loves her little ginger terrors and she can meow and make the sign the word for cat).

Derek and Clive. Likely this is all they've done whilst we've been away and they haven't even noticed we're gone.

We started off a bit depressed and emotional today. Late as ever of course and worried that Lilian didn't cope with her first night without any food via the tube. Mette was especially tired as she was up all night giving Lilian milk via the finger syringe whenever she woke up upset about being hungry. This was probably at least once an hour and was very hard work. I helped by being the pillow for Lilian to lie her heard on which was nice as I got to cuddle my darling daughter but bad because I got covered in milk. We had our last SLT session this morning. It wasn't much fun as we think Lilian was a bit tired and she refused her spoon. It didn't help that Mummy and Daddy were grumpy either.

However, later in the morning we got to meet with the Doctors and they were really impressed with how Lilian looked and acted today. She had perked up by then and we'd given her more milk via the finger syringe. Also Mummy and Daddy were happier too. They said that they are happy for us to not feed via the tube for the next three nights to see how things pan out. We need to ensure that Lilian receives at least 400ml of fluid (water included) per 24 hours. We should aim to feed Lilian little and often via the syringe so she manages to gain control of her tummy and mouth communicating with each other. As this improves the "little" doses will increase in volume meaning the "often" can be reduced. It might take a week or a month; who knows. In the meantime we're going to continue with play picnics at home and get that open mouth ready for more spoons. Oskar is starting to like drinking from a sippy cup so he's going to be a good role model for Lilian to learn from as she progresses from the finger syringe.


I think the majority of this process is actually aimed at the parents who I think are probably the biggest hurdle to get over. This is especially true with Mette and I as we've been told so many things by so many medical (and non-medical) people about how Lilian "should" be developing and what she "can't" do that we forgot to ask Lilian for her opinion. Lilian has told us that she can swallow, be allowed to get hungry, lose some weight and not be ill whilst staying happy and active and lastly she can learn how to react to a hungry tummy by being fed via her mouth and not a tube in her tummy. Thanks Lilian. It took us a while to understand and come to terms with this but we're on the road now and it won't be long.


So, we leave tomorrow with a partially tube free child. Not tube free which would have been fantastic but partial is also pretty good and we're chuffed. Given the progress we've made and the new skills Lilian has developed we're sure she'll get off that tube in no time at all. The three weeks have definitely been worth it and we'd like to thank a lot of people who've helped us along the way. Of course all the staff in Graz who've put up with us and our persistent questions. They don't escape that easily though as we're coming back via the on-line therapy when Christmas is over to get the tube gone for good. Both our families for their love and support without which this trip would have been nearly impossible. My work for letting me take three weeks unpaid leave at such short notice and lastly our neighbour and her two children William and Poppy who have looked after Derek and Clive everyday. I'm sure they loved it!