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.


Janet Chalupa said...

The photos bring tears to this Grandma's eyes. How beautiful!!!!!!

Katy said...

Where to start? SO many good things.

1. We, too, are investigating diet as a means of continued healing. I think that without a doubt we will be eliminating sucrose, lactose, and gluten as these seem to be major roadblocks well-being. It only took me a couple of weeks to figure that out! I move at the speed of molasses.

2. The pictures of Owen with Lily are just beautiful. The way they interact is amazing.

3. I notice in the third picture that Owen is looking in the other direction--a sure sign of that improvement you're talking about.

4. A mother on my ABR support board just got an exomotion chair for her son and loves it. I do wish I had some options when picking something out for Charlie, but I think he'll be fine. According to the mom on the ABR board, the exomotion is especially good for the high tone kids and Charlie is the exact opposite.

5. Like you guys, I am really struggling with the school thing. I know I'm not moving. I just have to decide if I want to continue to pursue traditional avenues for Charlie or stick to my alternative stuff. SO SO hard. Really, I could write an entire blog post on just this topic, so I'll stop for now.

Thanks for the update!

Dani said...

hello! saw your link on the exomotion twitter page....and just had to comment on the pic of the little sweetie in the red (maybe lil sister?) holding owen and looking in his eyes with a precious face of true love is just the best! great blog! i have a daughter with cp and she has two awesome siblings and i love to capture photos such as this one...beautiful!

Tim said...

It's been a while since I've caught up with your blog, and I seem to have come on the appropriate day, with such an amazing list of events. I'm always thinking of you all and sending you good wishes from the Rockies.

The Academy in CA looks amazing. Having grown up in the Bay Area, I can tell you it's such a diverse place--both socially and geographically--that anyone can can carve out their own niche. If you do ever decide, let me know and I can help you meet up with my multitude of family that lives in the area. Also, I can make arrangements to interview with GFC (we'd love to move our family back to the coast someday...somewhere nearby the Marshalls would be wonderful).

Cheers! And big hugs to all three of your boys.

Janet Oberholtzer said...

Found you blog recently and have enjoyed some of the posts, hope to read more soon.

May peace and strength fill you each day!