next

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.

an intensive home program

The last time I updated this blog, we were taking Gus to an ABM practitioner in St. Louis. This monthly visit was worth its weight in gold. Gus improved each time and it made the other therapies worth the time and effort to go. Splints were needed less and less and Baclofen was decreased. We were happy with the progress and appreciated the insight that both ABM and Feldenkrais practitioners have shared with us. Their knowledge, kindness, and understanding put hope back into us. It was during this time that we found The Institutes for the Achievement of Human Potential, http://www.iahp.org/

Because of this, we are taking a radical change in our daily life: from the myriads of doctors' appointments, therapists, splint appointments, etc., to spending all day, every day doing therapy at home. Time in the car traveling from place to place is almost nothing now. Instead, we live by the timer, constantly set at 5 minutes to do the next thing. Everything we do is part of a program specifically designed for Gus. The program is incredibly intense.

We have learned so much from The Institutes that we'd like to share, but with time limited, I'll share a little bit:

The first big change for us was with food. The diet we had to start Gus on took a lot of adjustment: no dairy, wheat, soy, corn, bananas, tomatoes, rye, salt, processed fats or sugar. We started to change his diet last December, just after the course but now we have the exact amounts of protein, fat, and carbohydrates that he needs. The process is a little complicated with lots of diet sheets to fill out (especially for me who doesn't know how to count calories). He complained at us for the first few weeks but after that, he's had no problems eating his food. He doesn't even mind eating greens three times a day.


He is happy almost all of the time now. He loves this program and although it is a lot of work, we love the difference it makes for him.

Here are some pictures of Gus doing a lot of what he normally does everyday:

not settled yet

Molly visiting the cows on the farm where her dad works.

We are going a little crazy: Matt's down on the farm in Cape working and staying there. The kids are at Grandpa's fishing, playing games, and chilling out. Gus, Molly, Aunt Deborah and I are all here left to try to sort out the kinks of moving, clean the house, and pack some more. Both babies really miss the kids and are giving us adults the hardest time they can. So, with lots of coffee, chocolate, and ice cream, we've survived this past week.

Tomorrow night, our help arrives!

Quick update on Gus: he is doing great. He is improving in small ways that add up to a lot. We've taken him again to see Chad, the ABM practitioner here in St. Louis and the difference is fantastic. Gus is starting to move his arms, hands, and really, his whole body in new and better ways. He isn't rolling over yet, but getting closer. Another big plus for us- his medicine is getting reduced more and more.

Molly is almost running around the house, keeping us on our toes as she runs away carrying everything with her.

Ian, George, and Rose are all having a great time visiting at Grandpa's. They all have a bad case of poison ivy and it rained all week long but they have reassured me that the games and movies more than made up for the bad weather and rash.

new stuff to learn, part II - a quick note

not only do we have a lot of new stuff to learn, but so does Gus.

Within the last month, we have worked hard with Gus to help him relearn how to move his body. Now, as we learn the best way for him to move, we have to reteach and try to undo some of the things we taught him. So, we mostly spend our days rolling on the floor, helping Gus army crawl, and have him push off of us. The arches in his feet are starting to develop, the curve in his spine is straightening out, his movements with his arms and hands are more free and smooth, and he is definitely more opinionated in what he thinks he should be doing (or more accurately, what we should be doing with him).

His extra tone that he always has to fight is lessening and we reduced his medications more. He is starting to vocalize more clearly and a few different sounds are beginning to appear. One great thing that seems to be happening (and we hope it continues) is that Gus seems to be developing an ability to calm himself down. If he gets really upset, he now gets over it and is back to smiling whereas before, we would spend a really long time calming him down, with little success.

We are in the middle of getting ready to move. We close on our house soon and then we'll quickly move on out, returning here to St. Louis for therapies and doctors' visits.

thank you for keeping up with us!

new stuff to learn

Christmas has come and almost but not quite gone yet. We'll be celebrating until the second week of January so our festivities continue on.....

We are all caught up with the excitement of our move to the country...the kids are counting the days until they can wander the hills and woods and their dad works only a couple of minutes down the road.

Amongst this excitement of future possibilities, there is an excitement in our home about Gus. This past week or so he has 'woken up' a bit more. He is more alert, more aware, and more involved with life. He enjoys putting his hands in the glue his OT uses for crafts, smearing it around and then loudly declaring that he enjoys or dislikes putting things on the paper. His attention now fixes on people, tracking them across the room when they come in and smiling quickly when they come close to him. Even in the ER, when having a port put into his arm, I was able to distract him by singing 'Old McDonald' to him and waiting for him to sing the 'O', which he happily did.

We visited this past week with a Feldenkrais Practitioner here in St. Louis. We went for a couple of visits to see how Gus would respond. The Feldenkrais Method (as far as I understand) is a method of movement that engages the brain and is primarily an educational tool, to teach people how to move better. For Gus, the education is for me and others who take care of him. The whole session is spent teaching us how to move him and how to teach him about his body. I took notes each time. The biggest, most important lesson we learned is how Gus moves. He currently moves from his chest. All of his movement, all of his effort, all of his energy is centered in his chest. We learned that most of his frustration and lack of coordination is because he is trying to make the movements through his chest instead of his abdomen and lower back.

Over the past year, we've developed some bad habits in how we've handled or positioned Gus. We often would move his head to the center or use his shoulders to straighten his back. Now that we know that his movement needs to come from his trunk, we are using that to reposition his back, his head, or any other movement. After doing this for just 5 days, we noticed that his shoulders and upper back were loose even without stretching. His arms are loose and stretch out more. He is also happier overall with much less frustration. He usually hates being left on his back on the floor but his comfort level in this has also increased. He is a great deal more tired but not crabby, just more relaxed. He even fell asleep in the carseat (he has hated car rides for a long time now).

This seemingly simple concept was completely unknown to us and has made a big impact on how we interact with Gus. Families with children with Cerebral Palsy talk about this method as well as the Anat Baniel Method (based on the Feldenkrais Method) and how much progress their kids make with them. These are not covered by insurance but most families familiar with them say that they are more worthwhile than many of the other therapies available. We are going to continue with this practitioner for the next few months and see if Gus continues to respond well.

Currently, there is concern by Gus' other therapists about his tight wrists. They would like to use Botox to loosen the tight muscle and allow time for the weaker muscles to gain strength and elasticity. We did this last year with his upper arms and progress was made with even just a small dose. With the progress of just this past week with new ways of moving him, we are encouraged to wait and see if we need to do a Botox treatment...already his wrists are more controlled.

We would appreciate any prayers concerning our knowledge and understanding to help Gus move better. One of the thoughts behind these methods, that I've read over and over, is that these kids can move, they just need to be shown how. Simple movements that Gus was taught last week he learned. I tried them on him later, and he repeated them - even moving his right shoulder toward his left knee. This is an answer of prayer for me. We covet your prayers. Thank you for caring.