Monday, October 5, 2009

Where oh where have we been?

So I have another post that I've been working on the last several days that relates to Infantile Spasms Awareness Week, which is October 11th through the 17th. But I just had to jump in and do a quick post today while the boys are sleeping.

We've been busy the last six weeks, which have included:

1. Owen going on Topamax.
2. Owen going off Topamax two weeks later.
3. Owen starting a wean off of Vigabatrin.
4. Owen finishing his last dose of Vigabatrin one month later. Yay!
5. Connecting with one of the co-founders of an amazing school in the Bay Area, The Avalon Academy, to learn about their education model.
6. Connecting with several moms via the blogosphere regarding schools, AAC (assistive and augmentative communication) devices, music therapy, etc.
7. Starting the process of exploring our options for school/education for Owen when he leaves the birth to 3 program in a mere nine months.
8. Writing a letter to Owen's neurologist to request that we start to wean him off of the ketogenic diet.
9. Taking Owen to an amazing naturopath in Seattle.
10. Connecting with a fabulous family in Seattle who have a son, Victor, who is very, very similar to Owen.
11. Obtaining a fantastic, life-changing, new piece of equipment, a Thevo Therapy Chair, from our friends at Exomotion.
12. Elliot getting the flu and running a temp and vomiting for six days.
13. Writing a letter to a new neurologist in Woodinville, asking him to take Owen on as a patient even though he has a two year waiting list.
14. Working with Owen's speech therapist to get him hooked up with switches so that he can learn cause and effect and, via the switch, ask for things like, "more water."
15. Connecting Owen with a feldenkrais practitioner in Port Townsend who has worked with the pediatric population for years. She's amazing!
16. Starting Owen on daily, small portions of lentils, carrot juice, cod liver oil (through tube), blueberries and vegetable broth - all except the oil, he loves and takes orally!

To summarize...

Vigabatrin, in the 16+ months Owen was on it, did nothing to control his seizures. He is AMAZING without it! He's alert, present, smiling, holding his hands in front of him, looking from side-to-side, scanning spaces, tracking. O is now only one ONE seizure medication! We will be trying a slight increase in this one, Keppra, to see if we can eliminate the remaining seizures. But so far, no new or increased seizure activity now that he's off of Vigabatrin. He IS a new little boy, however.

The Ketogenic Diet has been a life-saver and yet we are ready to try a wean. We were never interested in using it long-term. Owen has become increasingly intolerant of the high fat diet and has learned to retch and vomit up his formula. The diet is totally lacking in brain builders and in foods that heal and help him grow. He's weighed 20 pounds for the last nine months. Sure, we are anxious about the seizures coming back, but we always have the option of putting him back on it. He LOVES food, especially the fresh carrot juice, and handles it like a superstar. As a mother, it feels so amazingly good to start giving him foods that nurture his body and soul.

The Leemans! Victor is four and is so much like Owen. We connected with these fabulous folks through BL at Exomotion a few weeks back and just had dinner with them at their house in the Sunset Hill neighborhood of Seattle this weekend. Laura has been a shining star and has shared with me so many resources, including the name of the naturopath that Victor sees... Thank you, Laura!

Miroslawa Witalis is Polish and practiced as a physician in Poland and Switzerland before coming to the States where she received her ND at Bastyr. Her approach is rooted in science and her knowledge of neuroscience, neurophysics, biology, chemistry and physiology is incredible. We are seeing her to have her assist with getting Owen on foods that will help him heal and develop, to help with sleep issues and issues relating to bodily functions. More on this at some other point, but I've been searching for a naturopath who understands Owen, understand his history and who approaches him with sensitivity and thoughtfulness. I've finally found her!

Owen will transfer from the Birth to Three Program next July and his education will then be through the North Kitsap School District. We have so many things to think about relating to this... For another year or two do we work with private therapists (out-of-pocket expense) or have Owen go to a public developmental preschool? If the latter, here or somewhere else (which would probably mean a move for us)? What are the teacher-to-student ratios? Do they have the kinds of therapies and equipment that we want and that Owen needs? Many, many issues to consider.

We love Exomotion! We first connected with BL and Dutch, the owners, last year when we had Owen fitted for a Jazz EASyS stroller. We needed to have the stroller adjusted recently, so much so that I took it to them in South Seattle. This is where I (and Owen) fell in love with the Thevo Therapy Chair. They refer to the chair as "dynamic seating" as the back of the chair literally moves with the child. There are several "ribs" along the spine of the chair and along these ribs are dozens of small, articulating pads (think gecko toes) that move with the child. Instead of a rigid seat, which Owen ALWAYS fights, this seat provides the child with sensory input, even when they are sitting. Owen's response has been incredible. He no longer arches and fights when we put him into this chair, he is alert, awake, present and the hi-lo base allows him to be at floor level, playing with us or his brother or at the dining room table while we eat or at the kitchen counter as we cook. It has changed the way he perceives his world AND how others perceive him. I've included a number of photos below from our weekend stay with our dear friends (and family), Kevin, Kathryn and Lily. Owen was so accessible to Lily and to watch her interact with him and PLAY with him, read him stories and to watch HIM respond to her was so incredible. Thank you, Lily!

The other things on my list... well, I think they're self-explanatory. We've got so much going on right now and it all feels so good.