Like all her skills, it was delayed but we did get to the stage where we could explore finger foods and different textures and she devoured quavers and pink wafer biscuits (bite-dissolve texture).
Lou Lou loved her food.
But then we’d hit a bad patch with seizures and we’d see her skills regress.
The worst time coincided with chicken pox. Lou Lou was covered in spots and must have had them in her mouth and throat because she refused food and drink for days on end. We had to syringe water into her mouth and occasionally she would take some spoonfuls of yoghurt or custard.
Around the age of 2, Lou Lou spent some time on the ketogenic diet to try and control her seizures. It didn’t work in her case and didn’t make mealtimes any less stressful as it was important to measure everything and ensure she ate every spoonful. She did put on weight due to the high calorific content of the food.
Normal feeding resumed and we tried to help her regain her skills. She especially liked to drink. She loved her orange sippy cup and would lift it herself and gulp from it. However, it was not to last.
She started to get more agitated during mealtimes.
With a non-verbal child it is hard to know what is happening and we used to interpret it as a sign for more or to go faster.
Sometimes she would cough or get a rash across her chest. The rash would fade quickly but these were our warning signs of possible aspiration.
We reverted to smooth pureed food and started thickened fluids as a precaution and, following a video fluoroscopy were told to give her single sips only. Managing single sips proved difficult so she now has liquid thickened to a custard consistency from a spoon.
Feeding times got more difficult and she started to lose weight. It’s hard to get much volume into her and she likes to have her hands in her mouth even during mealtimes so it can be a messy affair. Throw in her agitation and increasing fussiness when presented with savoury foods and feeding has become a real chore.
She is exhausted after school so feeding becomes even more risky and when seizures increase or she is ill, we decided we needed a back-up plan.
Lou Lou will be having a gastronomy in the next few weeks and I’m really looking forward to it taking the pressure off mealtimes.
She will still be able to eat some meals orally and feeding can hopefully become a family social affair again.
All her medication, fluids and top-up feeds will go through the feeding tube and it can be used as a back-up during illness. We’ll also be able to monitor her intake better and hopefully eliminate hunger as a reason if she wakes in the night time.
I’m hoping we’ll see a happier and healthier little girl as a result.