They had the parent meeting with me yesterday to review Noah's current goals and progress as well as the results of his initial assessments. Here are some of the results (the very abbreviated version):
1. Poor strength and muscle tone in his cheeks, lips, and jaw.
2. Severe anxiety
3. Colitis and digestive issues
1. Sit in chair for entire duration of feeding session (30min 5x a day)
2. Open his mouth for a spoon with water to formula on it.
3. Accept and swallow formula from a squeeze bottle
Long term goals
1. All of the above, but work up to 25% of his daily caloric intake by mouth to include both formula and pureed foods.
So far, Noah is sitting in his chair for 30min per session. He is accepting full strength formula from a spoon and swallowing formula that is squeezed into his mouth from a squeeze bottle. As of today, he swallowed an average of 2oz per session. Usually we bolus him 6 times a day at the rate of 60ml (2oz) per bolus for a daily total of 12oz. (He is still on continuous for 10 hours at night as well) Today he drank a total of 10oz for the entire day! He only needed the additional 2oz by bolus!!!! The only downfall that they are concerned about it that he is retching quite heavily during his sessions. We are sure that his tummy is empty between sessions and is used to having the same amount by tube at a faster rate than he is drinking it, so we aren't sure why. They are discouraged by this because soon they will introduce food, and he will need to be able to accept even more during his 30min session.
They were quick to point out that we do have a long road ahead of us. It will take time and continued therapy to get strength in his face and mouth as well as working up to varied textures of food and eventually drinking from a cup and eating table food. Not to mention the obvious intestinal issues that he has. The whole process is going to take much longer than our 8 weeks here in Evansville. BUT, the fact that he is drinking 10oz of full strength formula after just 2 weeks, makes me want to do back flips!! There is a light at the end of this very long tunnel! I was discouraged by yesterday's meeting, but I do understand that there is hope for these feeding issues, we will get there, and finally he is getting the help that he needs. We are actually seeing progress and that is something we haven't seen until now! He is sitting in his chair and letting people touch and hold him, and that is HUGE for Noah! We are exactly where we need to be and each day is an improvement, no matter how small or large it is!