Happy 2007!

Thank You!
We’d like to acknowledge all of the people that have offered us active support throughout the year. As many of you know, our year started out quite miserably. However, we believe, that the support extended to us has definitely been cause for 2006 ending on a much better note than it began. To all of you who made us dinners, offered babysitting services, sent us gift certificates, offered donations of various kinds… we are so grateful for everything! It is the support that you have graciously given us that has allowed Gary & I the opportunity to be actively supportive for Victor. Victor is so fortunate to have all of you thinking of him in positive ways; imagining him running at the beach, playing with a ball, flying his kite, playing with your child, riding his rocking horse, holding our hands and singing a new song. We thank all of you so much!

We’d also really like to thank Victor’s special Seattle Grandmother: Lynn. She has been with Vic since shortly after his initial diagnosis at 3 months of age. Lynn has been instrumental in supporting and loving Vic, while giving both of us a needed break! We love seeing her smiling face 3 days a week!

Farewell 2006
Recapping 2006, I’ll start by mentioning that The Christmas Season of 2005 turned out to be the worst season any of us could imagine! Victor’s seizures were unstoppable last Christmas Eve. At 5pm, we rushed to the ER and landed in the hospital for 6 days only to be sent home and return a week later for a series of Status episodes (unending seizures). In the early part of January, Victor and I were rushed to the hospital by ambulance at 1am because he was in status. We remained at the hospital for another 7 seven days and were admitted for Aspiration pneumonia. 4 days later, we brought Vic to the ER to have his breathing checked. We were admitted for 5 more days!

Feeling as if the year were hopeless, we returned to the hospital for a planned admission to start the Ketogenic Diet. Vic’s seizures were totaling about 30-40/day! It took another 3-day admission and literally being mistaken for staff (Gary & I have become so educated at the hospital that even some staff thought we worked there!). Over the course of the past 10 months or so, we tinkered with Vic’s seizure meds and tweaked the diet. He started out at a very low ratio and to this day is at the highest allowable for his age/weight. 4:1 ratio is the peak we reached in early December. We feel the diet is definitely helping but we’re still looking for better results.

Not long after starting the diet, we learned that one of Vic’s meds was virtually eating his brain. Thanks to a wonderfully insightful doctor and incredible timing, we were able to restore Vic’s gray matter by weaning the only med that stopped his spasms (Nov 2005). By Vic’s 1st birthday he was off the Vigabitrin.

In the month of April we started taking Victor to the therapy pool. Leading up to June his seizures averaged 20+/day. In June, shortly after a wonderful birthday celebration at Golden Gardens we saw Victor’s eye doctor. It was clear that his vision had improved since his test in February, but not well enough to know what his vision might truly be. With help from his teacher at Boyer, we slowly began to see his eyes shift from center to midline and appear to focus better.

In July, and only for several months, we tried Acupuncture. We later felt that it was too difficult to determine whether it was making a positive impact and have since put it on hold. In July, Vic started Rolfing treatments: a form of deep tissue massage. We continue this treatment and feel that it is helping him reorganize and work well with his current physical therapy. By Mid-July Victor had a G-tube placed. He no longer had a tube coming out of his nose! He looks so much better and we no longer get stares from people on the street; life feels a little more normal without it! August came and so did Vic’s Aunt Janine (Ni-Ni). She helped out in a tremendous way and we all got to enjoy an outdoor zoo concert together. At that time Vic’s seizures numbered in the high teens. Keeping track of his daily seizures had become so draining that we finally decided to stop and just keep a mental note throughout the day. By the end of August, Victor started to wiggle while on his tummy (he still does to this day).

In September, Vic’s school appeared to be in jeopardy—Gary & I offered our parental duty and fought for Vic’s school by being very outspoken with our local government. Gary continues to work closely with the Boyer Clinic Director in the hopes of making sure that all kids, like Vic, get the best services that they need!

Since November, and the inception of Victor’s attendance at school, things have been much quieter than in months past. Victor is more stable as he’s now on the road to fewer seizures, slow progressive development and only 4 teeth away from having a full grin! He is sleeping better but continues to wake much earlier than we’d prefer. However, he has had several 9-12 hour stints----we’re delighted!

This Christmas season brought us almost all that we wanted: Peace, Quiet & Connections with the people we love. This Holiday Season also brought us some very nice and generous surprises from very supportive people! Victor has become stronger these past months and it is clear that the support and good wishes from all of you: our dear family & friends, has helped us to become stronger in coping with all of this. Thank you all so much for your continued, loving support! Bring on 2007!

Current Happenings:
I am pleased to announce that Vic’s seizures have decreased to less than 10/day! He has a couple of seizures that are more pronounced but they generally seem quite tame in comparison to seizures past. We have been increasing his Lamictal and slowly decreasing his Phenobarb. As things seem to level off, we’ll then decrease his Lamictal to a much lower dose. Weaning the Phenobarb takes a lot of time…he is scheduled to finish it (if all goes well) by the end of August (UGGH)!

We are also very happy that Vic has been approved for extra therapy. We have already started an in-home regime 2x/week and are already very pleased with the results. Vic will be receiving this therapy over the next few months.

At the end of January, Vic will have his g-tube changed and will be admitted for an overnight stay at Children’s. This is minor procedure and hopefully the only admission for 2007.

Check out the link to Vic’s debut on the Soulumination Gallery: http://www.soulumination.org/gallery5.html

www.youtube.com You can find small clips of Victor by searching "vicsmiles". New videos will be uploaded soon.

Next Update: Early February