'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!

14 months

Family Visit:

Well, I just may not always be on time with these updates but I will always make time to get it done. This past month has been quite busy (per usual). We had a recent visit from Gary’s sister, Janine, who flew out to give us each some much-needed rest. It was great having her, as both Gary and I were allowed a day to ourselves and we even finally had a movie and a dinner date (it had been well over a year since we’d done either). She was a huge help! We also took Aunt Janine to one of the zoo concerts and visited one of the parks while the Blue Angels flew overhead. During the concert, because Vic had just broken his 9^th tooth he was quite miserable but since free fruit was handed out, we all had a great time eating, listening to good music and visiting with friends.

Seizure/Med Status:
Since I last wrote, Victor has been off of one of his other meds (Zonegran) for close to 4 weeks. We believe it is totally out of his system as he really is so much more alert! Victor’s eyes don’t pull toward the center like they slightly did and he seems so much more aware about the environment around him. Regrettably, though, Vic’s seizures are still a big problem. He continues to have various types: mostly myoclonic and tonic and some tonic-clonic (grand mal), lasting anywhere from 5-10 seconds to 2 minutes. He’s numbering about 20+/day, which could be due to the loss of the Zonegran. We still feel that taking Zonegran away was the right move for his quality of life. We plan to increase his diet ratio again and may go up to 4:1. We’ve also introduced a very slow increase in a new med, called, Lamictal. I’ve heard good things about his med, so we’ll see what happens.

Good News:
We’re not sure if it’s the loss of the Zonegran or the mixture of other remedies we are trying (acupuncture, rolfing, sensory integration) but Victor has finally showed us some upward development! Two weeks ago, while Gary was out of town, I had taken him to an evening appointment. During his session, he had a few seizures so I laid him on his tummy (he likes being on his tummy). Out of the blue, Victor started moving---he was airplaning (the move most kids do around 3 months just prior to crawling). Victor suddenly and with such joy, wiggled his legs and rear, he got his arms out from under himself and stretched them to either side, he also was shifting his head in either direction and pushing himself up with his chest. I can’t describe fully how amazed I was (still am). He had a couple quick seizures during his “big move” and yet he continued to move and smile. He was so incredibly pleased with himself. I couldn’t wait for Gary to return home to see it with his own eyes.

Now, we put Victor on the floor much more often than we had. In fact, the next day, while at another zoo concert and showing our friends what he started to do, he nearly pushed himself over. We all knew it would have been too much, but he sure came close. He hasn’t turned over yet; both Gary and I can totally see what his abilities will be. Victor just wants to move so badly. While he enjoys being held, he is showing a more independent side of himself where he wants to be on his own. He sometimes wiggles in our arms or his chair and has also started to push with his legs. I am so proud of him!

Next Update: Sometime Mid September

13 months

Just when I thought I could make it to a full year of not getting sick, Bam there it is! It hit me pretty hard; some sort of weird throat thing that kept me up at night coughing in my sleep for two weeks. While I was dealing with that, Gary was busy picking up double shifts with Victor. On top of just trying to get by, we had lots of appointments these past couple of weeks as we’re trying some new alternative methods in dealing with Vic’s seizures and other issues.

New Treatment & Meds:
Victor had his first acupuncture treatment this past Wednesday. It proved to be very rough on all of us! While the Doc kept telling us he’s OK, Victor was writhing and crying in several waves that made it feel like demons were being released from his body. I had to look away several times and stay focused on the outcome. I can’t say that the one treatment showed us miraculous results but I can only say that something seemed different. Victor was very happy afterwards and giggled on our walk around the grounds. He’ll have another treatment this coming week and surely more in the future as we focus on various areas of concern.

We’re in the process of weaning one of his anti-seizure meds, called Zonegran. He will be off of this medication within a couple of weeks. Following this, we plan to start weaning him from the Phenobarbital and will then increase him on the Keto Diet. He still holds at about 20 seizures/day.

Hospital Stay:
Victor was in the hospital for one night, this past week, as he had his G-tube permanently placed. He no longer has a tube taped to the side of his face, which is wonderful! He had a tough time dealing with the pain (he cut his 8^th tooth the day before), so was given morphine and Tylenol every 4 hours. Thankfully, he slept pretty well through the night.

He also had a follow-up MRI. This MRI was to help us determine whether he has a mitochondrial disease and to see if having weaned him from the Vigabitrin cleared up the white matter that showed on his last MRI. Well, just as we were leaving the hospital and approaching the elevator, Victor’s neurologist caught us to tell us that his MRI now shows his brain as “normal”. This means that he most likely does not have a mitochondrial disease but we won’t know fully until all results are in from his muscle and skin biopsies.

Physical Development:
In many ways, Victor is about the same. However, we have started giving him pureed baby foods and he’s been doing just fine. He chews and swallows as he should and thankfully hasn’t developed an oral aversion. He only gets very small amounts each day as our goal is to have him eat foods orally and use his tube for meds only (this may take awhile).

Victor started using a different stander this past week, to help him develop the bones and muscles in his legs. This new stander allows him to lean on his belly. When he was first placed in the new stander, he was so happy. He smiled, picked his head up and looked all around the room. The clinic lent us the stander so we may use it with him daily, at home. I just know that he’ll make some huge progress with the use of this stander!

That’s about it for now. We have various appointments just about each day and will continue taking him to the pool, once his stomach is healed from his recent surgery.

Happy Summer to All!

Next Update: July 30

Victor: Now, ONE!

First Birthday!!
Victor turned one on Thursday, June 1st. It was a particularly rainy day so we waited all day for the clouds to clear so we could fly Victor's special kite. With friends, Eric and Vivian, we were able to let his kite take a short flight. On Saturday, June 3rd, we celebrated Vic’s birthday by taking him to Golden Gardens Park and invited anyone who wished to join. It was planned as a kite flying party, the weather turned out to be very warm and sunny with no wind. Regardless, it was great fun seeing friends we hadn’t seen for a very long time. There were lots of kids, bocce ball, some silly balloon thing that the kids loved (Thanks, Scott) and chocolate cake! Since it was Vic’s 1st birthday, we celebrated through the weekend by opening his wonderful gifts on Sunday night and having yet another cake (wheat-free for Dad).
By the way, Victor’s hair has a definite reddish tint to it! We are both pretty shocked as we surely thought he’d have dark hair. Suppose, time will tell. Also, he just cut his 7th tooth.

Motor Abilities: Victor is showing very slight improvements. While on his belly (mainly while placed on the therapy ball), Victor is starting to push himself up. He used to slightly pull his head up, but now he has moments of lifting his entire chest off of the surface. He is also showing better head control. He is moving his head from side to side more easily, as he plays and laughs in his Little Room. His hands are still fisted but he will open them more often than before and is starting to clearly bat at toys. He’s been scooching a lot while on his back and shows some signs of wanting to roll over. He’s still got a long way to go in all areas, but he’s getting there!

Therapy Update: Victor started Speech Therapy to help with oral motor control. As he is still tube fed, he thankfully has the desire to chew and tolerates objects in his mouth quite well. We will soon allow him to taste certain foods and he’ll start taking very small amounts of pureed foods too. I started allowing him to gnaw on a small carrot and he seems to enjoy it.

Upcoming Tests: Sometime in July, we plan to get results from the muscle biopsy that was taken in April. He will be scheduled for yet another MRI and will finally have his G-tube placed, sometime within the month.

Medical & Drug Info: Victor is completely off of the Vigabitrin, as of June 4th. There is a definite change in him: both good and not so good. Victor is becoming increasingly more alert and staying awake for much longer periods while slowly moving into a better sleep pattern (thanks to the nighttime melatonin). Victor’s seizures, however, are all over the place. For the past few months, his seizures were more predictable. He used to be awake and asleep every two hours through the day, and would seize pretty much just prior to falling asleep. Now, while he’s awake for longer periods his seizures have increased in number, intensity and are less predictable.

At our last clinic appointment (two weeks ago), we learned that Victor’s blood sugar level was quite low. We had to adjust his formula again by decreasing his ratio (currently at 3.25:1). In one day, we noticed a difference in his attitude. He has been so much happier and giggles more often than he had before. However, his seizures are more frequent and some are just more difficult to witness. He’s showing more classic jerking than he ever had and sometimes cries during and after them. His awareness of them makes dealing with all of this even more heart wrenching. We are still waiting to hear from the doctors with regards to his increased seizure activity.

In the meantime, we have started Victor on a vitamin regime which has proven to help with some seizure control (gee…it would have been nice to know this months ago!). Along with the various vitamins (B2, CoQ10, Acidophilus, Vitamin C & E) we are tabling the start of weaning his Phenobarbital. We don’t plan to start weaning for awhile until we see a positive change in his current seizure activity. It is certainly our hope to get him off of this med as we strongly feel that his motor abilities will improve once off of it but yet again, taking him off of anything brings risk.

Next Update: July 1st

May 23 update

Whoops, looks like I’m a bit late in my update. We’ve seen some changes in Victor that make us both pleased and quite concerned. As we’re continuing his drug wean he’s had the return of some of his longer seizures (Complex Partials). In fact, over Mom’s Day he had 4 of them in one day, lasting shy of 3 minutes/each. This has certainly worried us but the doctors feel it is not related to the Vigabitrin wean.

As a drug is weaned, it is not uncommon for some breakthrough seizures to occur. Typically a few may happen and then level off and (hopefully) stop altogether. It is our hope that the increase of seizures we’ve seen is due to this and they WILL eventually decrease. As of today, Victor’s averaging about 20+/day. Some are very quick and look similar to the Spasms he once had, so we are doubly worried: while it is the Vigabitrin that helped to stop the Spasms in the first place. As you can see, we are in a constant Catch 22 with many of the methods we try to help Victor. Undoubtedly, this makes it hard for us to focus on the positive.

However, as he comes off of the Vigab, he's been more alert and staying awake in longer intervals. This has helped his sleep habits, which are far from ideal as he continues to wake up in the middle of the night (1-2 hours at a time) on most nights. However, he has had some evenings where he’s slept 7-10 hours but those nights are rare and show no sign of rhyme or reason. We’ve tried and are trying everything to get him to sleep completely through the night but this kid sure has a mind of his own (hmmm, wonder where that come from?).

In the physical department, he’s showing more strength. In the mornings, we've found him scooched diagonal in his crib--this is encouraging for us as it shows us that he's gaining the ability to move. He’s also been pushing with his back and moving his legs independently. While on his belly, I’ve seen him push up slightly a few times and lift his head for very brief moments. In his Little Room, he’s been going to town! With a mirror in place, some chimes and a very bright ball and slinky he’s got lots to explore with and often moves his head in either direction, all the while making lots of happy sounds.

We continue to take him to Swim class twice/week and will for the next 2 years, until it’s time to lottery again into the next class. Being in the water has been very good for him, both socially and feeling his body move in various ways. Next week, we’ll start him on Speech therapy to help with improve his oral motor skills. Victor’s swallow is definitely obvious now, as you can hear it and he clears his throat very well. It is my belief that he will be able to taste foods (yet bland) very soon.

At current, Victor is weighing in at shy of 22 pounds and is still 31 inches long. He’s still got 6 teeth (which are big) and those feet are getting bigger too, as he’s jumped to the 12-18mos size. Victor turns one on June 1^st. It is hard to believe that a year has already passed! He’s a strong and stubborn little guy—which we’re happy about, as I think that’s what’s making him survive all of this crap!

Thanks again for your thoughtful prayers and support, it does help!

Happy Memorial Day weekend!

Next Update: June 11^th