Today was good - Daniel got food (yea!). They are still doing all the facial excercises and have added a few tongue excercises too. They put a probe on his teeth and tap 3x and ask him to use his tongue to touch the probe. They alternate sides and this is to try to get control of his tongue. They are also still working on getting him to accept the full spoon in his mouth and he is still gagging a little. It gets better and better each time. Today they put food on the spoon and are trying to teach him that he has to clean the whole spoon off before he releases it. If he doesn't clean the whole spoon they re-present it to him and tell him that the whole spoon has to be cleaned of food before he releases. He is doing well. I don't get to feed him this weekend so he's going to have to be on his feeding pump a little more than usual. The reason for this is 2 fold. The first reason is that they want to see what he retains over a weekend. They want to go back in on Monday and see if he remembers the cues and what he is supposed to do. The second reason is that they don't want me to do things differently than what they are doing and thereby hinder his progress. I agree with both of their reasons and will be anxious to see how he does on Monday. I can tell you that this week was exhausting for Daniel. As the week progressed, you could see him getting more tired by the 4th meal of the day. Today, he was really tired by the 3rd meal and by the 4th meal his head was hanging and his eyes were really droopy. This is a kid that doesn't nap during the day but fell asleep in the car on the way back to the hotel. The therapist said that even though they are working with his mouth, it is still hard on him. These are things that he has never done before and it can really tire him out.
The progress we made this week is amazing! These are the bullet points:
1) He would not allow anything but the tip of the spoon in his mouth. He is now taking the full spoon in his mouth and only gagging a little.
2) He would never let anyone touch his teeth. He is now letting them put their fingers in his mouth and moving the finger along every tooth in his mouth as well as allowing them to put their finger clear in the back of his mouth and pulling out on his cheek to stretch the cheek muscles.
3) He would not open his mouth for anyone. Now all you have to do is say "how big can you open your mouth" and he will open as wide as the grand canyon.
There are probably more but you get the picture. This week was great for Daniel!
Well, I'm off to get some things done before tomorrow. Daniel and I have the weekend off from working with his mouth so I probably won't update until Monday after therapy. It's supposed to rain here tomorrow so most likely we will hang out at the hotel. Sunday is supposed to be half way decent so maybe we'll find a park, musuem or mall to go to.
Take care!
-Angela-
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