Boston & May Update

Wow, it’s already toward the end of May and so much has happened since our last update! We broke a lot of ground while on our trip to Boston/ Connecticut …we did things beyond what we thought we could do and all the while, Vic was a true champ. He did great on both plane trips (a little Ativan goes a long way) and slept just about the entire way. He even saved enough sleep for us to catch a little shut eye.

It was so great for us to see friends and family that we hadn’t seen for a few years! Gary and I even had a chance to go out in the North End for dinner, with a group of friends while Vic hung out at the hotel and entertained a babysitter. I delighted in being back in Boston. I loved seeing the (real) Big Dig and I even ate a cannoli at the bakery I used to go to on Prince St.

Victor loved meeting his cousins and family. He really loved being held by all of the people who love him so much. It seems pretty clear that Vic not only loved visiting with his family and friends but he’s an East Coaster at heart. He hardly complained at all, while on our trip but it became evident that the vacation was over when we walked into the SeaTac airport…the crankies returned!

While our trip was a wonderful time to catch up with people we hadn’t seen in years, it was really a time for us to seek the thoughts of another neurologist. We saw a very nice doctor at Boston Children’s who didn’t have any breakthrough news for us but gave us a few more things to consider upon our return to Seattle Children’s. Primarily, we agreed to push one of Vic’s meds to the furthest we could go, in order to see whether it is the right med for him. Like all else, figuring out these meds takes time a whole lot of patience and is basically a gamble. It’s also been suggested that we try another muscle biopsy but to consider doing this at Cleveland Clinic where the muscle can be tested fresh. The purpose of this is to rule out any other mitochondrial disorders.

Since our return we’ve increased one of Vic’s meds (Lamictal) and are now at 26mg of the Phenobarbital (a year ago it was 120mg). While he’s scheduled to be done with the Phenobarbital at the end of summer, he’s already showing some slow progress. He seems to be more in tune with his surroundings and is pushing more with his legs. In fact, now as I write, his two therapists are commenting on how well he’s pushing with his arms and his legs. He’s gaining head control but this is sure to improve after today’s biggest event ever!

I also need to mention that Vic & I attended our first local Norwegian parade held on May 17th and within walking distance to our house. We joined our pals, Eric, Laurie, Vivian & Miles. I wasn’t sure if the loud noises would bother Vic but he handled it all surprisingly well. Except for the loud fire truck sirens, he loved the marching bands and giggled the entire time. Whoo hooo….go marching bands!

Good News & Upcoming:
Today, I took Vic to an optometrist who placed a couple of lenses before his eyes. Victor lifted his head from chin to ceiling and with very wide eyes looked around. He locked eyes with the doctor and seemed to be amazed by what he’s been missing. He followed a few objects better than I had ever seen him accomplish. I still get teary-eyed thinking about what I witnessed for the first time---a real sense of hope! Vic will be fitted for his first pair of glasses tomorrow.

Also in days ahead, we’ll be taking Vic to see a local chiropractor. Thankfully he’s walking distance to our home and has shown a lot of promise with a friend’s son who is also now holding his head quite well. This treatment will begin a week after Vic’s 2nd birthday.

Another bit of good news is that this past Monday, while Vic was in the hospital for an overnight EEG the results showed that while Vic continues to have seizures, he’s actually having fewer than what we thought. Unfortunately, he’s having clusters of strong seizures.

Next Thursday (May 31st) we’ll be in the hospital again for a 2-year MRI and a lumbar puncture. From the spinal fluid we’ll be testing his neurotransmitters to determine if he’s deficient in any that he may need. We’ll also be conducting a full allergy test and plan to work with a naturopath. We’ve already learned from a mild allergy test that he shows intolerance to soy. This is good to know, since his formula is soy based. Hence, we’re in the process of changing it now.

Next month is quite busy. Not only will Vic turn 2 years-old (June 1st) but his Aunt Noellyn will visit, a friend is hosting a Cajun band party in Vic’s honor, we’ll be viewing Vic’s film at the Seattle Film Festival, and we’ve got a couple of outdoor zoo concerts lined up. Phew, it may take me awhile to catch my breath before the next update.

Good things are coming! Stay tuned…….


(Sorry, I haven’t had a chance to upload new footage on U-Tube but check back in the next week or so)

Jan-Mar 2007 Update (finally)

Sorry for the long delay getting this site updated and thanks for reminding me that I needed to get it done. Vic and the family have been very busy with many things. Vic is doing about the same and showing some slight vision improvements. He is showing an ability to focus better and fix on an object. He seems to have gotten over the worst of his teething and is sleeping longer and through the night more often than not. Vic continues to stay on the Keto Diet with some minor tweaking in the solid food department. Now, we puree all of his food and have stopped giving the pre-made jar foods. Instead, Victor enjoys mashed up chicken with a variety of sides (banana, carrots, peas, broccoli, & applesauce) and we’ve incorporated pork and beef with a bit of reluctance on Vic’s part. He seems to prefer plain chicken and banana. The benefit is that we know what’s in the food and Vic refluxes less.

Vic continues his private in-home therapy twice a week, which really has shown improvement. He is holding his head much longer and able to sit longer w/o assistance, but these are two areas we continue to work on quite hard. Vic still enjoys standing in his stander and being held to stand and still loves to be pushed in his swing. He is showing some progress with his hands but still not grabbing anything with purpose. We’ve seen Vic’s seizures go up and down, but primarily holding at about 12 seizures/day. Unfortunately, we’re seeing some stronger seizures, which I attribute to growth, teething and perhaps our exhaustive daily regimes. It is hard getting Victor on a schedule because of his therapies which impacts his nap times and rest is so important for Victor to restore his energy.

We’ve spent the past few months working on various things: Gary is getting back into our basement project, we are both busy with new jobs within our existing companies, and becoming more involved with Victor’s school (I’ve helped spearhead a Mom’s Group). Since mid-February, we hosted various family member visits from my side: my brother and his family, my parents and my sister all recently experienced Life with Victor. We have also been preparing for our upcoming trip to Boston/Connecticut which happens in a few weeks, and we have spent a lot of time researching some new treatments/therapies for Victor. I’ll be taking a weekend Reiki course soon; something I’m happy to learn prior to our big trip. (http://www.reiki.org/FAQ/WhatIsReiki.html)

We’ll be going to Boston Children’s mid-April to see another Epileptologist for his opinion on Vic’s situation and to help us uncover any other stones that haven’t been turned over. Our appointment is scheduled for one day, so the rest of the time we’ll visit with friends and family. Half way through our trip we’ll drive to Hartford and stay for 3 nights, where many of Gary’s family will meet us. We are all looking forward to seeing everyone!

Oops, I almost forgot...Victor was recently filmed with Lynette from Soulumination (she’s been taking the wonderful black and white photos of him) for a minor documentary. We don’t have many details, other than we already filmed it and will hear if/when it will be entered in Seattle’s International Film Festival. I’ll keep you posted, when I hear something.

Investigated/Current Therapies:

Litle Bit http://www.littlebit.org/ (Vic is currently on the 1-year wait list)

Handle Institute http://www.handle.org/index2.html (We met with the founder and have put this on hold until we see more progress with Victor. We’ll probably wait until he’s off of the Phenobarb—scheduled for end of summer)

Mind Of One Pediatrics http://www.drdevorah.com/ (We started seeing this doctor a month ago. She’s the only person who wants to really attack Vic’s obstacles from various directions. She has a lot of experience with kids like Vic and we feel his treatments are helping).

I’ve included a few photos throughout the blog of the visits we’ve had with Vic’s cousins, uncle, aunt, and grandparents along with the recent photos from Soulumination. I hope to find more time to update this blog more regularly but if it takes me awhile, assume we’re just busy and having fun somewhere.

Love to All and THANKS for your positive support!

Interesting article from the New York Times on epilepsy: http://www.nytimes.com/2007/02/20/health/20epil.html?ex=1175572800&en=fe89863c03da3ade&ei=5070

Next Update: (hopefully) Mid-May.

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

'Tis the Season

WE WISH EVERYONE A SAFE, HAPPY AND HEALTHY HOLIDAY SEASON & 2007!

Recent Events: After visiting with Santa recently, we then walked around The Country Village in Canyon Park. We enjoyed walking around and looking at the shops, seeing the cool lights and having the ducks, chickens & roosters surround us. We think Vic liked it too!

Update: Vic is still in the 50% for weight and height. He's got about 16 teeth and still working on more (UGGHH)! We've some brighter days with Vic, now that most of his teeth have come in. He seems to enjoy the new school routine and getting his hands gooped up with paint. Vic is starting to bear weight on his feet and is holding his head much better (he's still not at 100% control). Vic is now at the highest ratio on the diet; 4:1. The jury is still somewhat out but we have seen a reduction in seizures, just not exactly the reduction we had hoped.

Tis’ the Season!

If you enjoy the benefits of sharing with others by making donations to solid, worthy causes then check out our recommended list below. These 6 organizations either affect us directly or keep a warm place in our hearts. Please consider making a donation to any of these great causes or to one of your own this Holiday Season: A time for Giving!

Vic’s school offers him both therapy and the experience of being with other children http://www.boyercc.org/about.html

Victor will soon be featured in the Gallery of Soulumination: a non-profit that focuses on sharing the lives of children who are not blessed with good health but are blessed in so many ways! This Org. has been featured on the TODAY SHOW. http://soulumination.org/donate.html

Epilepsy can be devastating and has been one of the most common illnesses around the world, for centuries! Just think: Scientists know more about outer space than they do about the human brain! Research is so needed to help cure this horrible illness that we are so directly affected by!
http://www.epilepsyfoundation.org/howtohelp/

We love this organization! It is a way to help third-world entrepreneurs start their own business and give to their communities. You may lend however much you’d like and see your money returned (100% return rate) or recycle it to another business. This is a great way to help communities by helping them, help themselves, and learn about where your money goes! http://kiva.org/

NPR & our local public TV station are both a huge part of our lives! Back in the day, when we were able to donate to good causes, these were our regulars. NPR offers a great source of music, stories from around the globe and excellent news coverage! Public TV does the same and has wonderful documentaries and educational shows! http://www.npr.org/ http://kcts.org/
Next Update: Early January 2007

16 & 17 months

16 & 17 months
Victor seems to have settled down with some of that crazy irritability. He’s got about 12 or so teeth and still working on 3 more to pop out, but since those two bottom molars have come through, he sure is happier. Vic has been eating well and now weighs close to 26 pounds. Since he still isn’t mobile, he sure is heavy! Vic continues to scoot around on the floor and while working with his therapist w/ crawling, his legs follow behind just as they should. It was so exciting to see this movement for the first time, but we’re still not quite close to crawling. Victor is also showing some good weight-bearing on his feet and holding his body better for sitting up. Yes, Vic remains on the Keto Diet (he will for a long time). We will soon bump his ratio up again to hopefully gain better seizure control. Two clinic visits ago his key tone blood level was only at a 7; it should be 40. After tweaking his diet a bit we got him closer to the 40 range. All of this means that while his level was way below therapeutic, his seizures weren’t as out of control as they could have been; meaning that we have more hope of success, if he does get closer to the 40 range.

Exciting news is that throughout all of our hard work with the Natural Environments stuff, Victor started preschool on Nov 1st. He is in a class with 2 other boys, in the afternoons on Mon & Wed. You can see him in the photo snoozing away and then wearing some silly glasses (not they aren't for vision therapy)! He also has a 1-hour vision group on Friday mornings. I wasn’t sure how he’d do on his 1st day, as the class is from 1:30-3:30 (prime nap hours), but he did great. He slept only the first 20 minutes and after I woke him up he was raring to go and in great spirits! We are so excited to see how much further along he’s going to develop.

We were home for Halloween this year and Vic had a great time. In the afternoon we went to a senior program similar to one I used to work at several years ago. I had the chance to see some old friends and introduce Victor to some fun music. Vic did great and showed off some giggles. Although we didn’t go trick or treating, we handed out candy and enjoyed a visit from our friends, Laurie, Eric & Vic’s girlfriend, Vivian.

Recently, we’ve been asked to participate in a project for Soulumination (the organization that took those black & white photos: www.soulumination.org). Lynette would like to take photos of Victor and some UW football players. It is wonderful to be able to give to an organization that reaches out to so many people, when our resources don’t allow us to donate like we used to. I’ll keep you posted.

Activism:
Things have settled a bit with some of the hard work we (mostly Gary) had been doing to protect programs like Victor’s school (www.boyercc.org). Gary has met with the County department head and several other centers. He has been extremely well spoken in standing up for kids like Victor! We were told by the dept. head that he will revamp the entire draft document of rules with regards to our issues and plans to start over, putting our group in charge of who will be nominated to work with the county. This is big, but we are still waiting for the County’s formal notice to all county centers/programs.

NEW: VIC’s VIDEOS! We’ve recently added some short video clips that can be viewed at your leisure. To see Vic’s videos go to: www.youtube.com and search “vicsmiles”. I will try to upload more videos soon.

Thanks for reading and sending Vic your positive healing thoughts!

Next Update: Sometime mid-late December.

15 & 16 months

Free Photo Opportunity!

I am pleased to share with you several select photos that were taken by an amazing woman named Lynette Johnson. We were offered the opportunity to have Lynette photograph our family through the suggestion of a kind employee at Children’s Hospital. Please see Lynette’s organization, called Soulimation, which focuses on capturing wonderful moments of mostly terminally ill children and their families, at: www.soulumination.org Victor’s photos will soon appear on her website and she has offered to follow him through the years. THANK YOU SO MUCH LYNETTE!!

Victor Update:
He still has more seizures than we can track in a day. In fact, we stopped tracking them altogether because it was a constant reminder of how bad things are. Victor is still on the Keto Diet but we learned this past week that his keytone levels are down so much, that he is close to being out of “Ketosis”. This is both good and bad. The bad is that somehow we have to figure out what has caused this. It may be related to the fact that we also feed him orally but we are not willing to stop feeding him orally.

So, we are hunkering down to an even more regimented feeding schedule. On the positive side, while Vic still has seizures and some are certainly more violent than others he is still somewhat stable. We haven’t had to rush to the ER! I feel that if he’s been able to stabilize at this level while we took two major meds away, that perhaps if we get him to where he should be again that things will turn around for him.

Becoming Activists! Wow, we have been so busy! If you haven’t received one of my emails explaining a little bit about our current dilemma with Victor’s school, please see the article that was printed in our local Seattle Post Intelligencer: (click on the video, it is quite powerful). http://seattlepi.nwsource.com/local/285633_boyer19.html.

At the beginning of August when we first learned that Victor’s amazing school might be in jeopardy because of a Federal law re: the definition of Natural Environments, I immediately picked up the phone and asked many questions of the school’s Director. It then was quite obvious to both Gary and I that we had to take a stand and fight for Vic’s school! Victor currently receives in-home therapy through an early intervention program called, The Boyer Children’s Clinic (www.boyercc.org) has been operating since 1942…well before Early Intervention programs were recognized and well before Natural Environments; it is a truly remarkable place! Boyer is on of the four centers within our county that serves over 80% of children who have special needs. Boyer offers both in-home therapies and a preschool program geared toward kids with special needs. It is so similar to any other preschool with Circle Time, a gym, a playground, daily activies but the staff are so well trained and the environment is so loving and understanding that any child/parent immediately feels connected with the community and does not have to focus the child’s deficits as so many would force us to do.

Anyway, both Gary and I have become so involved with this issue that we have formed a group of parents called the League for Infants with Special Needs (LISN). For more information on the issue with Victor’s school, please visit our blog at www.li-sn.blogspot.com. You may also send any comments to us directly at: li-sn@hotmail.com.

THANK YOU FOR YOUR SUPPORT!