A Day in the Life, Part 3

No professional can tell us that David is in there, looking at and listening to everything around him and taking it all in, but as his mom, I KNOW he is. And so do others who know David. That being said, I will talk about the things we do to help him receive and express language, and the things we do to help him on the path to swallowing, eating, and one wonderful day, getting the trach out!

One of the major effects of David's brain injury is vocal cord paralysis. He can breathe, but it is extremely difficult without the trach as there is a paper thin opening between his vocal cords. He can make sound too, but it takes a very forceful breath to get beyond the trach. Our primary goal for David is swallowing. Successful and consistent swallowing is the green light for vocal cord surgery and trach removal. At least six times a day, usually during feedings, David receives some form of oral stimulation.

From left to right, here are the tools we use to help David engage the many muscles in his face, mouth and throat: baby toothbrush, spoon, flavored tongue depressor, various Z-Vibe tips, Z-Vibe, foam oral swab, gum massager, soothie, raspberry, passy muir valve. David also has the opportunity to taste a variety of flavors, and his brother is usually eager to help with this! Nutella is the latest favorite.

All the exercises and activities we do with David are sending messages to his brain to help him relearn things that his brother has already been doing, with one exception: reading. This part of the program is enjoyed by both Donnie and David. There are numerous books and strategies for teaching children to read, and we have chosen to implement the reading program as prescribed by the Institutes.

In short, we show the boys a group of five words, three times a day. The words are in large red font. David loves the words, especially his name. Donnie loves to run around with the words, so they are well worn.

When the boys start to lose interest, a new group of words is introduced. Right now, we just finished a group of five animal words.

We also read books to the boys regularly. Twice a day we have story time. Here are a few favorites:

The stack of words we've read is growing. I need to get out my paint marker and crank out some more...and there are heaps of vocabulary that can be included. From the standard "cat" to multisyllabic words like "spaghetti," I keep adding new ones to the list. The beauty of this program is that testing is absent and the focus is on getting the information to the brain. It reminds me of kids in my pre-k class who could read labels better than classroom material. Why? Probably because that information is exposed to them repeatedly and in large format without the pressure of formal assessment.

It is exciting to see David responding to the words and to see Donnie beginning to express recognition of them. Donnie is a great helper, and tries to participate in whatever his brother is doing. He also motivates David to participate in what he is doing, because like his parents, Donnie recognizes that his brother is in there and KNOWS what is happening around him and WANTS to move and play. And we believe he will.

In the last three posts I have covered all the parts of the program we do with David on a daily basis to stimulate his senses and send information to his brain. I imagine all the little neurons hard at work in there, integrating and making great use of the information he is receiving. I don't think any of it would be effective without the greatest therapy of all: love.