I said I would try to fill you in on the rest of the details and so I'll try now. We are kinda busy with all of this and the nights are late, the mornings are early. The daily discipline is really good for all of us, especially Gus. The benefits outweigh any effort we put into it. His improvements are the encouragement we need to keep going. Here are the things we are doing daily:
1.Masking
We've started a breathing program called masking. We all tend to be a little skeptical in our home, after all that we've heard and seen and it was no different with this program. Masking was the easiest part of the program to do. Every 7 minutes throughout the day, for about a total of 50 times a day, we have Gus breath into a mask for 45 seconds. Doing this improves Gus' ability to breath and therefor get more oxygen to the brain. After two weeks of his masking, his circulation was fantastic. He always had purplish hands, feet, and legs but now, we see no discoloration except slightly on his feet during cooler days. We also notice that his ability to respond has quickened.
One observation made during that week to the Institutes was that Gus yawned a lot. It's not something we've ever paid attention to, we just thought he was always tired. Well, that too has almost disappeared. He now yawns very occasionally which is great because putting him to bed takes less effort and time - he just gets tired and sleeps. Sleeping is also better - his breathing his deeper and quieter throughout the night. (I wake up at all of the noisy breathing so I sleep better now, too.)
2.Choice Board
We were introduced to the concept of a choice board for communication with Gus. We have been very frustrated (both Gus and all of us) with the lack of understanding between us. My mom witnessed this while we visited them last fall. During meal times, we would ask Gus if he was all done. We would say, "Gus, if you are all done, look at the napkin. If you want some more, look at the spoon." Unfortunately, this method relied on ability to not just look at an item, but to make sure that we understood that he was looking at it. We also were trying to encourage him to touch the item. We had been doing this for the past year or so and he started last fall to cry each time we asked. We would just stop feeding him and he had no real way to tell us he was still hungry. Gus' vision relies a lot on peripheral so we are not always sure that he sees something. Really, this method was very difficult for Gus and we didn't realize it.
The choice board is simple: a large X with 'yes', 'no', and '? I don't know' written on three on the sections. I held him on lap when first presented with this idea. They instructed me to gently support his hand, move his hand and tell him where the 'yes', 'no', or '? I don't know' was, and then to ask a question and wait for his answer. It requires no vision and only the minutest movement for us to know the answer. I sat holding him, not sure that I was able to communicate with my son, after so long of not being able to. I asked him, "Gussy, do you like to play with Molly?" He laughed and then took a couple of seconds of thinking before moving his hand to the 'yes'. I cried. It was the first answer I had from him since his accident. After that, we asked him everything! We wanted to know what food he liked, if his diaper needed changing, if he wanted to read a book, if he liked ... you name it, we asked it! I felt that more of my son was given back to me. His frustrated crying during meal times completely stopped and because we have a clear way to know what he wants, he is happier throughout the day. (And so are we.) The choice board is modified to fit any question we have: we simply tell him that the 'yes', 'no', or '? I don't know' is whatever the options are currently. It's amazing how well it works.
3. Hips
A major concern we've had with Gus, brought to our attention here, in Madison, is his hip. We didn't know that the right femur was 40% displaced until just a week before the visit out east. Looking at the x-ray, they were able to show us what we could do at home to help prevent the need for surgery. As soon as we came home, we implemented this part of the program, as well. Every day, 6 times a day, we stretch the tight inner thigh muscles, pull his leg into position, and use a special magnesium solution keep him loose. Currently, we are seeing consistent alignment with his legs and he scissors his legs less and less (that's when the legs cross over each other while straight).
4. Slide (aka inclined floor)
The program is a lot but the parts that the kids can help with, they love to do. He continues to go down his slide, 30 times a day. We are working him up to go a meter each time (on the flat floor), after the slide but right now he only goes about 20 inches. His movement on the flat floor with all of his toys has become faster and more purposeful. He also has started to move on carpet, not just on the slippery linoleum.
5. Patterning
We are patterning Gus 8 times a day, each time for 3 minutes. Patterning is when we place Gus on a foam bolster (to protect his hips) and show him how to move his legs and arms, as if to move along the floor. We have a few other movements that we do with him at those times as well.
6. Reading
These next couple of weeks are the weeks that we start the final part of the 6-month program: intellectual. We've already been doing part of this program by having black and white checkerboard walls with simple bright pictures (moveable). Now, we will be implementing the reading program. The next step is to start teaching him words (not expecting him to read out loud, just recognize them).
Thank you for your thoughts and prayers. We can tell the days that you are praying for us.
