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.