Wednesday, January 4, 2012

1 step forward 2 steps back...

Wednesday 4th Jan: Day 3

Max's tube feeds have been dropped again now to only 700ml and only overnight while he sleeps until 5am. So nothing at all during the day. We started the day at the hospital at 8;30am with swimming. Steve and Max went in the pool with the other dads and kids and I watched with the other mums. The idea of swimming is that for the kids to be emerged in liquid and enjoy it will help them get over their fear of drinking it. All 3 boys here are the same in that they don't like water on their faces, they don't like having their hair wet or to be touched on the face and head. It all stems from the oral aversion.
Next was speech where Max was encouraged to enjoy more water play. She gave him a tub of water to play with and got him to bath and wash the faces of some toy animals (Max does not let us wash his face or brush his teeth). She then told Max the animals were hungry and could he pls feed them. She gave him a spoon and he spooned water into their mouths, which is great! We told her that he had tried some food the night before and she was very happy, so we all thought he must be starting to get hungry and may be better in the play picnic.
Next was OT. This was our first OT session. We were mainly asked about if Max is sensitive anywhere else beside his mouth. We discovered yes he I, as he gets very upset if his hands get dirty, even a spec of dirt or sand or food he becomes very upset. He also does not like to hold hands or be touched on his hands (or feet) too much. Again she explained this is all related to early trauma and all the negative experiences he had with needles and lines in his hands and feet as a baby. She said the focus of OT was to slowly desensitise these fears. She said he'll never help himself to food if he cant tolerate messy hands.
Next the play picnic.."The main event" as we call it. Max was showing signs of hunger by clearing his throat and moving his mouth as you would if you were eating. He interacted a little with the other kids but again didn't touch any food or drink at all. One of the other boys, John was touching and playing with the food and even allowed one of the Dr's to smear some chocolate on his mouth, which he tasted. They said Max is not ready for this yet. We were hopeful he would try something after trying the chocolate the night before, plus he must be so hungry! But nothing.
We met with the professor and he told us to again drop Max's tube feeds.
We've been told no more dummy, only in the first few minutes to get him to sleep. We've always encouraged the dummy as we figure its a oral experience that he enjoys. He loves his dummy and we had to take it off him there and then at the hospital. Max cried and begged. The professor said its like giving up smoking, the more he has the dummy in his mouth the less likely he is to eat. When you give up smoking you eat more because you are looking for the oral stimulation.
We went home and laid out a variety of foods on a small table for him to go to if he wants to. Its so hard to not say anything or offer it to him, as a mum I instinctively want to say "here Max here's some food, have some pls," but this is exactly what not to do. We have to make him feel in control of this choice to eat, so it is HIS choice not ours. We sat around and ate tea and just chatted but he showed no interest at all, which we felt was a step back from the night before.

1 comment:

  1. Kristie, I am really enjoying following this journey. Thanks for sharing it. I am a bit disheartened as it sounds like it wouldn't be benificial to Nico due to his other issues (ie not being mobile or being able to hold things or put hand to mouth) but I am still really curious to see the various methods they use and maybe adapt for our situation.
    Thanks again for sharing!!