Victor's Debut is finally here!

Not only am I finally updating Vic’s Blog but we have also been given the green light and link to the film that Victor was in 2 years ago! Yes, now you can view this beautiful short documentary (that features Vic for about 1 minute): “Portaits of Hope” by award winning director, Jon Ward can be viewed by simply hovering on the title, then click to open. If you desire, you may download the poster (featuring Vic) by scrolling toward the end and selecting the link.

As for how things have been going with Victor and us: Since January, we’ve been recovering from colds and catching up with final home projects. We are now in full use of our basement with only some minor decorating left. The bathroom is coming along and will be ready by mid-May, however a 2nd toilet is planned for use prior to Gary’s sister’s visit (next week) and the 4th bedroom is close to done!

Victor has been plugging along with his school & therapy routines. He really seems to love school as we’re always told that he perks up at circle time. In fact, Gary told me of a day where he brought Victor to school and they caught the middle of a special movement/music session. Both Gary and teacher Laura were a little unsure how Vic would cope with all the noise. Apparently, all the kids were banging away on various things and with Vic’s sound sensitivity it would not be unusual to suspect a bad outcome (seizures). Alas, when Vic entered the room he went from quiet and a little grumpy to delighted and giggly (and no seizures)! Gary delighted in seeing Vic be so happy among his classmates and actually enjoy adding to the happy sounds!

We continue to be amazed by the small things that make Vic happy and the way in which he’s handled a barrage of nightmarish incidents. He can truly go from an awful cough attack or listlessness to suddenly pull out the smile card or even the giggle bug. Check out the video I took this past Sunday. It was taken moments following a very unhappy Victor; all it took was his favorite squeaker and some silly background music.



On the therapy note:
Victor began Listening Therapy during his winter break, in February. This consisted of him attending 1-hour sessions, lasting 14 days. During his therapy, he basically listened to Mozart and some Gregorian chant. However, the music was interrupted with various breaks and stops and customized to Vic’s listening abilities. Victor’s hearing is excellent and this therapy is not intended to aid with his hearing. He can hear a pin drop or a sniffle across the room, when no one else would pay attention. From this therapy, although somewhat hard to definitively decipher, we’ve seen Vic show more interest in the world around him. His focus on objects seems to have improved and he does seem to make more attempts at lifting his head into a more neutral place. Yet, we still contemplate the relevance of this therapy and will likely try another session (15 days) in a few months to give us a better gage.

Hippotherapy continues to go very well for Victor and he seems to have improved his trunk control. He really loves his sessions with Zoro (the horse) and his therapist, Deb. In fact, following his ride, he adorns a big smile and often giggles in the car. Perhaps it is not just that he is on a large animal or playing in the therapy room, before riding Zoro, but the fact that he is literally surrounded by wonderful people during his rides. The wonderful volunteers who graciously join his sessions each Thursday adore Victor and I suspect he absorbs their energy. Elaine and Patricia add so much to making his sessions even more enjoyable and we thank them for every minute spent with Victor! Hippotherapy recently had a 2-week break and Vic will be back in the saddle this Thursday.

Swimming: Although we don’t swim with Vic as often as we used to we’ve recently discovered the Bellevue Aquatic Center. It is a long haul for us, but this pool is simply amazing. It is so nice to have a pool that truly caters to people with disabilities. This pool has a family changing room and a warm therapy pool. In fact, if we wanted to go there during a regular family swim and it was too chaotic for us, we could have them section off an area only for us or even request that the pool be emptied (a cold pool is across the way)! And, another great thing is that not only is the pool generally at 92degrees but it also has a walk-in ramp. Too bad there aren’t more pools like this for so many people that really need them and Kudos to the City of Bellevue for supporting this!

Medical stuff:
We continue to work closely with our naturopath who has identified Vic’s low iron levels and recent low cholesterol. We are combating these issues with supplements and goat yogurt (high in cholesterol and protein). So far, Vic’s labs show that these methods are proving him justice. It is also evident in his overall being. However, in spite of the positive things that have improved Vic’s health, he continues to struggle with seizures.

Many of his seizures still are an outcome of his intense sound sensitivity or lately seem related to (yet again) teething and perhaps a growth spurt. We have decided to make a change in his seizure meds because of the severity of some of his seizures and are currently weaning the Canadian med called, Clobazam. For Vic, we couldn’t see a noticeable change in seizure activity and we found that he became real floppy instantly after having been given this med. We felt that this med has contributed to his recent inability to keep some food down because his muscle tone has been directly effected by this med. So, we’ve decided to go back to Celontin.

Celontin was a medication we attempted just weeks before Vic’s hospitalization, last June. At that time when we didn’t know whether it was the Celontin or something else causing his illness, we stopped the celontin. Now that he is has been so much more healthy, we’re giving this medication yet another try.

Random happening:
This part of my update has absolutely nothing to do with Victor or us, directly but this happening was so cool that I thought I’d add it to the Blog. One evening while leaving my eye Dr appt and heading toward my car, I saw 2 white ponies with a girl on top of each. They each wore white and had on large white clocks upon their heads, that lit up. Their entourage wore top hat and coat tails, holding large lit up stars. Ok, I couldn’t control myself; I had to see what was going on. So I asked and learned that there was a free outdoor play going on at our little Old Town Ballard bell tower. There, was the coolest sight: all characters dressed in white with beautiful music playing behind them. They were acting out a scene from"Lullaby Moon". While I could only stay for about 10 minutes, it made me so happy that I felt the need to share. I love random, happy things! For more information on what I’m describing check out this website and view their amazing photos! www.lucianeare.org


We’re looking forward to family visitors and hope the sunshine that now rains on Seattle stays with us much longer!

Have you seen this toy?
This toy is perfect for Vic, it lights up, plays music, giggles and the little heads fit his hands really well. But, we have been borrowing this and it's time to return it. This is a discontinued item, so in case you're out at a yard sale or 2nd hand shop and come across this, please scoop it up for us. We're happy to reimburse any costs. Contact me if you come across this by posting a comment.