June-Sept 2009

I preface this entry by saying that not only do I feel badly for not updating this blog for many months, but I can’t believe that October is already here! Also, it is with great joy that I write about the wonderful summer we FINALLY had: No unplanned doctor visits, hospital stays and overall—a stable and only slightly bumpy Victor. Now, I lead you to read the original entry I attempted weeks ago. It is my hope to write a follow-up to this entry including Vic’s return to school. Read on!

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Wow, what a busy summer and I can hardly believe that we’re already done with Labor Day. As I write, we are on a plane to New Jersey! Thank goodness we got through check-in, security, the gate train and managed to get Vic on this plane. Talk about traveling with a lot o’ stuff :1 large bag + 1 med bag + 2 small rollers and of course, the carry-ons, not to mention his stroller and car seat! Oh and YES, Vic was patted down---it must have been his sly criminal element. He passed (little do they know that we packed heat in his feeding tube--joking!).

It has been over 2 years since the 3 of us traveled this distance and it will be 7 years since both Gary & I have had the chance to see all of his family in one place. We’ll even get to attend a surprise party for Gary’s uncle and make a short jaunt to see my friends in CT.

We’ve been up to many things these past few months since I last wrote. Gary & I did a major (27 days) Detox, I took a one night trip to Reno for my sister’s wedding and then all of us took a trip up to Mazama, WA where we actually relaxed and had the ability to finish our books. Of course, Bernie LOVED running through the woods the entire time. We spent most of our trip down at the river and Gary finally got in a game of golf.

We returned home to the nearly completed basement project which came just in time for the major Seattle heat wave. Hitting a record 104 degrees, we spent several nights in the new bedroom and have loved taking baths in the new soaking tub. During the Ballard Seafood Fest we got Vic a cool new swing and now that we’ve been able to take out the extra furniture from his room, we have more trajectory to swing him in---he laughs and laughs!

During the month of August we took a short trip to Lopez Island where we walked along the beaches, Bernie played with rocks in the water, we picked blackberries and Victor got his first real barber shop haircut. Day 1 after arriving and just prior to closing for the weekend, Vic was able to get the last cut of the day. It is so nice to see Vic actually needing a hair cut because he now has hair!

Also in August our Dear Zetterl/Bailey crew returned from Germany and the 4 of us had a chance to enjoy and adult dinner. Also over the summer and for the rest of Aug we took in a few zoo concerts and Gary & I rounded out the summer this past weekend, with a wonderful day trip to the Gorge, where we saw Dave Matthews play at a surprisingly dry concert after a full day of heavy rain. Just before heading into the concert, all were blessed with a double rainbow and after not going to a concert like that in 7 years, we sat in row 17, saw everything and danced, danced, danced. Totally AWESOME!

As for Vic, when school ended in June, at that time I was worried that the summer would pass s-l-o-w-l-y. However, a new routine kicked-in and we were busy with daily therapies, swim lessons and tandem hippotherapy. Vic has been busy and doing great in his new chair which has made feeding him so much easier.

With regards to how Vic’s been doing…
His seizures continue and yet another med has come and gone. Depakote just didn’t seem to do the trick so we took him off it just last week. We are now trying a brand new med called, Vimpat. We are slowly increasing his dose. So far, he seems more alert but it’s tough to say that we’re seeing much seizure control, especially since he began teething again the night we arrived in Lopez up to now (Uggh). Mr. Victor magically times things so well. Alas, after 3 consecutive weeks of waking every night, Vic slept through the night last night---a night we all needed to sleep especially for this trip. We’ll see how the rest of our vacation goes.