Welcome 2010--many things happening!

2010 is here...a New Year already in full swing and I find myself still catching up on various projects (this blog, for one). The recent Holidays gave me much gratitude for the first GOOD year we've had since Vic entered our lives. It's odd saying this as most parents likely reflect on that first year of life as the "best year"- a time of new beginnings, hope, joy and wonder--I recall quite vividly wanting those same thoughts and,at times, I did but mostly that was swept from beneath me. In its place of wonder and joy, we instead experienced: fear, worry, anger, and often feelings of "Why me?").

As we've struggled these past 4 1/2 years with Vic's issues and the uncertainty of knowing where his future lies, it is obvious that we have had our fare share of roller coaster rides! I don't think anyone assumes our life easy or wishes they were in our shoes but as much as these years have taken a toll on us, these years have also been more of gift than I would have ever realized. I am amazed by the hurdles we've crossed, sometimes overcome, and all the while felt such love from so many directions. It is times like now, that I am grateful for our family, I am grateful for my little boy, my hero, my rock!

As I move forward with this feeling of gratitude, I begin 2010 happily announcing two major accomplishments:
1. It has been over a year that Victor has had to be admitted to any hospital or we have had to rush him to the ER for any unforeseen health concern.
2. Vic's seizure activity is the lowest it has been--EVER! We have actually witnessed a few random days later realizing that he wasn't struck with a seizure at all! I get chills writing this, because I'm not sure how many times I've wanted to say and write these words--it's finally here (and it scares me a bit--apprehension still permeates). This is not to say that he now routinely has no seizures, but his seizures are certainly less and it is quite noticeable.

Victor is generally the happy boy that I knew he would be. After years of crying and major discomfort from being literally hit in all directions, he is mostly very smiley and giggles freely at just about anything. We notice that he is more alert and certainly paying more attention to nearby stimulus. He does, however, still struggle with various things and we still often feel that our road is long and sometimes treacherous but the ride is a bit less bumpy than before.

Since our last update, we had a great Thanksgiving with family and a relaxing Christmas, at home. Again, this year we took in the Christmas spirit by visiting the Aquarium. And this time, Victor got to feel some of the fish and see the big octopus close up! Between Thanksgiving and the New Year, our schedules were busy with visits to friend's homes or having guests in ours. All in all, a wonderful Holiday Season at last!

And, recently we had the chance to reconnect with our friends, The Marshall's who are a ferry ride away. It was a lovely visit for all of us but probably more so for Bernie: he met his match with his now best friend, Dutch!

School is back in session and so is swim therapy. However, this winter quarter we slowed our calendar by taking a break from horse riding. In it's place, we bought Victor a horse riding machine called, Giddyup. We use it with him daily and his in-home therapists have also found it to be helpful. While it isn't as fun as the real horse experience, he seems to enjoy it and that make us happy.

Also, at Christmas, we purchased a Vitamix and are now giving Vic blended foods. Vic continues to struggle with oral feedings but I am glad that we finally found a way for me to get him real food instead of just formula. Of course, we still mix in a host of supplements but so far, things are working well. To help us with the oral feeding issues, we've started with a new speech therapist. She comes 1x/week and is great. We have a plan and a goal--something we've been lacking for a long while.

Another therapy that we are strongly investigating is called Anat Baniel Method. We met with a practitioner in the early part of December for 6 sessions. Please check out the website and make sure to view some of the videos...they are amazing, especially the one on "Elizabeth". We are currently grappling with how to incorporate this new therapy into our lives. Not only will it likely require us to travel to either California or New York it will undoubtedly be costly (not covered by insurance). So, we are trying to weigh our options with seeing Anat, herself.

And what would my blog update be without my 2-cents on Healthcare reform?
Days after our insurance carrier was changed, we were notified by The University of Washington that our (then) carrier was no longer being accepted. Aetna and the UW (which includes Fred Hutchinson Center, Harbor View Hospital and Seattle Children's). I believe this is the beginning of many more health care providers who are standing up for themselves in the face of insurance carriers who have dramatically decreased what they will reimburse.
Gee, I never got the option to tell a provider what I will/will not pay. On the contrary when I didn't have insurance, I was sent a bill and had to pay it. There was no negotiating.

I can't imagine what we would have done if we couldn't see our doctors! Sure, we could still schedule an appointment but we'd have to pay out-of-pocket for all of our visits which are in the hundreds of dollars range. While we're lucky to have our policy switch to a different carrier that is covered at our doctor's offices, the reality is that many families are without this advantage. In fact, many families across the country are without health insurance altogether. This means, bills pile up, often are unpaid and the medical providers are left flipping the bill. How, I wonder, can people think that this isn't related to the state of our economy? Hmmm..... Just wait for when more Haitian refugees and returning soldiers come to America with mounting health care issues!

YOU CAN DO SOMETHING TO MAKE CHANGE HAPPEN (even if it often feels hopeless with our current political climate)! Contact your local congress people, senators and reps. I have and I continue to do so! It often takes a few minutes to fill out an online form. For more info on HC reform, click here.

See Epilepsy Foundation for more information.

Also, refer to this article about generic medications. Many insurance companies will cover generics but not all generic medications are good for everyBODY!

Last, on a different note, please watch this video provided by FACES, "YOU CAN DO THIS" to learn more about epilepsy and what you can do to help someone in the event of a seizure.

Until our next update.......
Check out my new Flickr site, it includes pics from the last year.

Cheers & Happy New Year!