Eating Update

Sometimes it's hard to see the amazing progress Emma is making when there are so many things we are working towards.  A friend reminded me of this over the weekend and so I want to take some time to celebrate how far Emma has come at mealtime.

Meals with Emma were a challenge from the beginning but her recent progress with eating and communicating is making meal times more enjoyable.  The fact that Emma takes all her food and drink by mouth and has never had a feeding tube is somewhat unusual for children with Emma's challenges.  Many children use a feeding tube for reasons that span the spectrum from using it to supplement meals all the way to completely replacing oral feeding.  Emma's slim body along with all food/drinks taken by mouth has - at times - made for some stressful meals but now we are at a good spot with eating.  She has a desire to eat and is really motivated to eat table food but her chewing and eating skills are limited and put her at a high risk for choking.  Her doctors (and us!) want her to continue progressing towards table food so she had an evaluation at the Feeding Clinic at CHOP which is rated as the best feeding clinic in our area.  

The evaluation overall was good.  It seems like we are doing all the right things to help Emma achieve her goal of the eating food off our plates instead of her own plate ;-)  We are moving her towards thicker and chunkier purees, giving her mashed foods, offering her meltable foods, assisting her with self-feeding.  Emma sooooooo wants to hold her spoon and feed herself!  The feeding team gave us a few suggestions including focusing more on drinking from a cup and having her therapists at school carry-over the suggestions during snack time.  Overall, though, it seems like we are already doing everything right to help move her along in starting to eat more table foods.  It will just take time and practice.  I do have to confess that I was slightly saddened that they couldn't give us a magic pill...

Since Emma isn't independently eating and she would like to have more control at meals we continue to use the iPad during meals to give her a voice and more control.  She uses it really well most days to let us know if she wants to eat or drink. We had been using the program Proloquo2go but after working with it for a year and a half we decided to try out another program.  Emma's friend had been using My First AAC app and when I saw her use it I knew it would be good for Emma since you can LOCK the screen so it doesn't keep scrolling which was one hurdle with Proloquo2go.  This feature along with the pre-made categories filled with pre-school age words really makes this program a good fit for us.  

Here is a video from today's lunch.  The screen is set up with two icons - Milk and Fruit.  The program allows for the screen to display up to 8 options but Emma's motor control isn't good enough to accurately select between 8 items with her hands and 2 seems to be the magic number for her accuracy.  Her communication being limited by hand motor control is a key reason we are moving towards the system that uses eye gaze technology - we don't want Emma limited to choosing/saying only two items at a time.  Anyway, we use Milk to mean drink and Fruit to mean eat since we can only show 2 items at a time.  Emma knows this and is quite good at requesting what she wants without prompting.  Using the iPad during meals has cut down on lots of crying when we are trying to guess what Emma wants.  You can see the screen of the iPad at about 1:05 into the video.  

Note:  I would say that sometimes I could forget to focus on the fact that Emma now has a method to request food items that she uses consistently during meals and that she actually takes all her food/drink by mouth and instead focus on the fact that Emma can be quite messy while eating.  But, I'm learning to celebrate her progress rather than focus on what we are still trying to improve!

Here are a couple of more videos from the other day.  Notice how Emma has the choice of two different food options - a chunky applesauce and rice krispies with almond milk.  Both are harder for her to eat than a puree and she is able to request which food item by her protest sound or happy sound.  It will be nice once we have our own Eco2 so we can program it with multiple meal items that she can access via her eyegaze instead of being limited to 2 options as she is right now on the iPad.