Connections!

Now that we’re past Halloween and I find myself (again) behind on updates. I feel these past few months have been all about connecting with new people and reconnecting with those that we just don’t get to see very often at all.

Our trip to New Jersey just after Labor Day was wonderful. Vic surprised us with how well he traveled on the plane and how well he did the entire trip. It took a lot of personal gumption, on our part, to not only pack our bags, get through the airport and security but get on the plane! Gary & I were quite nervous about Vic’s sound sensitivity—not knowing how he’d react but he did extremely well! In fact, he had 1 small seizure during the entire flight and unfortunately 1 rough Sz as we landed in Seattle. All in all, in terms of Sz—Vic hardly had any the entire trip. I believe it was related to the constant activity and new medication.

We all had a great time catching up with Gary’s family and even took a brief 2-day jaunt to Connecticut to reconnect with friends of mine. The weather was beautiful the entire time (minus one rainy day) and we were able to see just about all of Gary’s family at his uncle’s surprise party. Gary even took in a game of golf with his uncle. I also have to mention that not only was seeing family & friends big on our list but re-experiencing delicious East coast deli and homemade Italian food—Oh Momma Mia! Oh, how I fondly think about those cannolis (even when I ate too many and got nauseous).

The return trip to Seattle was absolutely beautiful! Everything was so clear….it was magical to see the mountains: the Rockies, The Cascades, Mt. Hood and Mt Rainier! It was a wonderful return flight home (minus that 1 harsh Sz) and we jumped right into our hectic schedule-Day one.

Vic returned to school on Sept 21st. I accompanied him through the day and we both rode the bus home together. Vic was totally enamored by the sound and feel of the bus. He giggled just about the entire way home that day and I’m told he still does. He loves being in school again—hearing his friends, his teacher and having activity around him. I LOVE that he’s in school—period! He gets such great stimulation at school and is always coming home with painted fingers or some leftover art project on his clothes—it is wonderful.


An interesting thing happened while we were in NJ. I checked my email and got a message from a woman I’d never met. She had heard about me through a mutual service provider and contacted me directly. After reading her message and later her blog, I was immediately drawn to this wonderful family. The Marshall’s are similar to us in so many ways, namely their son Owen is very similar to Vic.

It is uncanny how alike we are to this family that lives a ferry ride away on one of the nearby islands, they are also in the coffee business, owned an Element and now drive the exact same Odyssey! We are so like-minded. After back and forth emails and a long phone call, we finally had the Marshall’s over for a lovely sunny October day filled with not enough time to discuss so many things.

While we’ve met a handful of families that share one or two of our struggles, it is bittersweet to share so much with a family who truly understands the many issues that surround being parents of an extra special needs child. Owen and Victor are similar in many ways. While they are unique boys from each other they share a disturbing and also precious bond. We are so grateful to have this family in our life--sharing, listening and being available for each other while we cope with tumultuous days, moments, endless appointments and therapies. But we also share a unique inspiring journey that only we can truly quantify. Please read Stacy’s post, “Reaching for the Stars”. This passage hits very deeply, for me (and us)—it depicts insights to the lives that none of us would have imagined…a sorority I never would have dreamed to join but am connected to for the rest of my life. Thanks for contacting me, Stacy!

We just ended a family visit from my sister who came at the end of October with her son & daughter. They arrived just in time for Halloween and the Day of the Dead festival. It was great running around Seattle for numerous activities and many were a first time event for all the kids to share. Their journey was quite long but they savored up enough energy to experience a Northwest Fall, filled with unusual rainy and cold weather compared to their typical sunny days. We all enjoyed spending time together, being silly and of course, Bernie loved every action-packed day and every one of them!

Now that the family visits are over, as we head into Thanksgiving mode we’ve been rethinking some of Vic’s therapies. While we adore Victor to the ends of the earth, the reality is that his challenges come at a hefty cost. We have decided to put hippotherapy on hold for the winter quarter and see how things go for us next spring. In its place, we may invest in a horse-type machine that will allow all of us to benefit from the “riding” motions and will offer his in-home therapists some variety to their routine.

In light of the recent Healthcare bill, I thought I’d mention a bit of our reality (along with millions of others). On October 1st, our employer's insurance coverage and company changed. With that, so did some of the therapy allowances. While we are continuing with in-home therapy, it has been cut by half and I’m told this will end when Vic turns age 8. Apparently, many companies halt therapies for kids when they turn 7 or even 6! The insurance companies believe that by some miracle at this age, kids don’t need it since they get therapy in the school systems. Hmm....so, 30 minutes a week is enough for a child who has severe challenges. I am compelled to share a completely ridiculous and true story....

A nearby upper-middle class family with insurance coverage through their employer ordered the same chair that Vic now uses. Their carrier (who is very well-known) has burned so many service provider bridges in WA State, that they had to go through an equipment provider in Oregon to order the same chair that Vic has. This family resides 20 minutes outside of Seattle. The equipment company is located in Seattle (ExoMotion). The order for the chair was literally shipped from Seattle to Oregon to this family's town, near Seattle. It took days of shipping plus a person from the Oregon supplier to drive it back up to the Seattle area and to top it off, the delivery person was without knowledge of the equipment and could not answer the families questions about it!

We too have been in the midst of battling to get the things that our policy says we should get and also get reimbursed from our former insurance company on the things we already paid for. Besides therapies we are trying to figure out how we will get Vic the proper equipment he needs, namely a bed—one that is NOT meant for a typical child or an adult with limited abilities but meant for a child with varying degrees of disabilities and safety issues. I am investigating ways to get the SleepSafe Bed, which was denied by our previous insurance carrier—ugh…Back to Square 1!

And, this friends is why we need CHANGE and good ol' competition. No insurance company should be given the right to waste this kind of money and dictate ridiculous policy while also deciding that they just don't want to pay service providers the rightful fee that is owed them! In fact, it is because this industry has for so long been dictating to the medical field and providers that the actual providers have had to increase their rates, to keep up with the strains that insurance Co's have put on them.

I realize I'm going on a limb with some of our readers but frankly, I see no difference between the concept of a government OPTION and Social Security, Medicaid & Medicare. I have hope that we will one day see a country come together on this issue, where competition will allow the numerous amounts of premiums and co-pays that we pay for, to actually provide the coverage we are expecting, without hassle. I have hope that one day every person in our country will be treated as a human being and not judged by how much or how little their income stream is. ---Yes, a radical idea!

General Health
I am very pleased to say that Vic is doing quite well. Vic got his H1N1 shot and we are waiting for the 2nd dose in a couple weeks. While Gary and I struggled for a month with a nasty flu/cold, Vic has been minimally harmed. He now has a sniffly, slightly gooey nose and is treated with nightly Benadryl. Recently, Vic’s sleep is waaay off and driving us crazy. He woke up the past 2 nights and didn’t fall asleep until 5am, Monday. Last night, he was awake from 11-2a (teething again).

Vic continues on the newer Sz med called Vimpat. We have increased his dose slightly since our return from NJ. So far, he seems to do quite well on it. However, more recently we are deducing that his low seizure days may be attributed to a new finding that we are working closely on with our Naturopath (I’ll share more about our mini-experiment in my next update). Still, Vic reacts negatively to sounds but not always having a Sz and his Sz’s in number appear to be less than 3/day. I honestly think he’s recently gone a few days with no Sz’s at all!

I should also mention that Vic’s inability to move as he should has given our doctor credence to recently diagnose him Victor with Cerebral Palsy. Although this just adds to Vic’s list of “issues”, we hope this diagnosis will help with the many services that he needs.

This update seems lengthy enough for now so until I have time to update again….
Happy Thanksgiving and don’t be afraid to Talk About It!

Much Love & Gratitude,
Laura, Gary & Victor


***NOVEMBER IS EPILEPSY AWARENESS MONTH***