But there is hope, there is always hope.
At last we have started a program with Lively Eaters in Adelaide to build the foundations for our little lady to learn to eat.
It isn't going to be easy. There will be many challenges and road blocks but it is start. It is hope. It is a beginning of a journey Faith is ready for.
Hope that her days are not filled with vomit and being fed through a tube. But days that can be enjoyed with tastes and textures and experiencing the wonderful social experience of eating.
I take eating for granted. It is so easy for me but for Faith, it isn't. She has an oral aversion and no longer understands or knows how to eat. There are many reasons this has happened and contributed to this but dwelling on them isn't going to fix the problem. My thoughts have lingered too long on what ifs, we now need to look at solutions and steps forward not back. Looking to the future. So with the great invention of Skype we have begun. Small steps is all it takes and it easier than I thought to just start.
After several years of tube feeds, bad habits and survivals habits emerged and a few simple structural changes has seen such a change in Faith already. Not just in food but in her. First, no more iPad, TV or play during tube feeds. Meal times, as they are now called, are at the dining table and we all sit together to have some food. Our little man is a perfect meal time pal for Faith with his exploration for food, let's get messy approach and love of food. He is always offering or stuffing it in her face. Faith allows him to do this but not us.
Meal times now have a piggy timer, so Faith understands when meal times begin and when it ends. We sing grace before we start, start the pig timer ( fifteen minutes to start with) and all tube feeds are done out of sight so she can't see them and only sees food. She will have a sense by seeing food and becoming full instead of seeing her tube and becoming full.
There has been tears, tantrums, sobbing, anger of frustration but overall Faith has had fun. She has even started touching some food. She knows coming to meal time there is no expectation at this stage on her to eat orally.
Practice and being consistent are the key.