It’s amazing what can happen in 7 weeks! We’ve done and been through so much these past weeks that I can hardly think of where to begin retelling it. Let’s see….following Labor Day we’ve plugged along with Vic’s weird(er) diet. Vic already had trouble with keeping his food down on the diet but with the replacement of dairy to oil, he clearly has issues with it. With the inception of the oil diet, it has been even more difficult on his system, leaving him crankier and urpier than ever!
Since I last wrote, Vic has not been taking regular naps and in fact, his sleep habits have been horrible and have only recently improved. For over two months Vic has been quite difficult to put to sleep and stay asleep. These past two months it has been like dealing with a newborn, but worse. It had been difficult to lay him down for naps or
to just lay him down to sleep. Regardless of how tired we knew Vic would be, he would wake up multiple times through the night. Gary had been living on 4-5hours of sleep each night! Two weeks ago, after several nights in a row of trying to give Gary a break, I finally phoned our nurse and told her that we are at our wits end. We’ve been unsure as to whether he’d been having seizures 
in his sleep, causing his sleeplessness. I wasn’t sure if we needed to do another overnight EEG study. She suggested we do a sleep study to see if he is having apnea of any kind and perhaps another VEEG. We are still waiting to hear as to when/if either will happen.
Of course, literally the night following my phone call to the nurse Vic actually slept! Our “little noisy car” has been on good behavior almost ever since I made that call. I now know, and I suppose I always have attributed most of this to that damn teething! This is how it goes…he wakes up grinding, the grinding leads to upset stomach, he pukes, he cries and wakes up. Frankly, all of us have been wiped out with the teething, the diet, and trying to figure out what his meds have been doing to/for him.
If you recall we had an issue with his Lamictal in August. Since then, we’ve been wondering when the lamictal may have spiked in his system which could add to the impending sleeplessness, crankiness, upset stomach. Mid Sept, we flew down to Reno to visit with my family. Althoug
h we stayed in a nice resort in the privacy of our own apartment, the trip for us was extremely difficult. Victor was so sensitive in every way, leaving us unable to relax, especially Gary. Vic was still having trouble keeping his food down and was more sensitive to oral feeds than he had in the past. With the stress of travel, in general, Vic’s health issues impacted our ability to fully have a good “vacation”.
It gets worse…literally, the morning of our return flight, two hours prior to leaving for the airport, Vic profusely vomited. Nothing would stay in his stomach! I was a mess! The preparation before travel with a child is always stressful, but now we had to deal with deciding on whether we should reschedule our flight or take him to a local doctor. With the ease of his g-tube and the feeding pump we use each night, we connected him to water and kept him hydrated. He settled a bit 
and we opted to get home ASAP. We gave him an ativan to calm him down and thankfully, he did.
I did lots of Reiki on the flight home and sat nervously in our back row, while both Gary and Vic had time to catch up on sleep. We weren’t sure if we should take him straight to the hospital when we arrived, but he literally perked up when we got to Seattle. A few hours la
ter, he was able to take in some food through his tube and keep it down. We skipped school the next day and I monitored him. It was as if nothing had happened; he was smiling here and there. I contacted our nurse, told her our story and requested that we test his Lamictal level. We weren’t sure if the lamictal had indeed spiked and had caused all of this commotion. I took him in 3 days later for labs. The results showed that his lamictal level was ok but he had lost so many electrolytes that he was in a fatal state. Basically, had we not requested a blood test for the lamictal, Vic could have had a heart attack and died! The solution: salt water. Since we had changed his diet, he apparently was lacking the sodium he needs, causing him to have an upset stomach worse
ned with all of the oil. In a matter of days, the salt water has made a huge difference! He is not puking like he was and he is actually quite happy.
With his stomach calmed but his teething kicked in, his sleep disturbed, two weeks ago, the day Gary planned a retreat to help work on a friend’s cabin, Vic
had an enormous seizure! The night prior he had hardly any sleep at all, falling asleep at about 7am. I let him sleep until 10:30, woke him up for breakfast and while he sat in his highchair, he convulsed like I’d never seen. Meanwhile, Gary was outside working on our fence. I knew this seizure needed Diastat—no watching the clock, I just had to give the emergency med. I grabbed Vic, ran to his bedroom, yelled out the window for Gary and started to Diastat him. Gary finally came in, we gave him the med and Vic eventually calmed down (me too) and went back to sleep. It was horrifying! I really thought it was going to be a 911 situation. Vic slept that afternoon until 4pm and eventually slept through the night! Gary canceled his retreat.
Needless to say, perhaps you can see the pattern here. Sleep is vital to Victor’s system! Not having had enough sleep, combined with the hard teething, set him into a horrible cycle of seizures.
After dealing with that situation, the past 2 weeks have literally felt blissful. We did another blood test and found that his electrolytes have stabilized and his lamictal did spike. We regularly give Vic salt water and are weaning him slightly from the Lamictal to get him to a level that is safe for him. He is sleeping more regularly and napping but we do have intermittent days. He has been happy—and I mean, like any baby is. He has been so happy and giggling, it is such a joy! To see him
smile and giggle at the things he sees or does, gives me the most tremendous feeling of gratitude that I can hardly express it here. Our little guy is so strong, it amazes me what some people (including myself) complain about and I look at this child and think, “he is a miracle”! He is showing me how to love more than I ever thought I could, how to be patient and how to appreciate the life and health that I have.
Throughout all of this hell, we’ve managed to try and remain as Normal as is possible. In September we fit in a zoo trip and day trip to Gig Harbor. Last weekend, Gary (and partly I) finished p
utting in a fence adjacent to the crazy rental house. We are now searching for a dog for Victor. Eventually, we plan to fill the side yard where the new fence is, in with woodchips and make it a dog run, where Gary also plans to build a 
shed and dog house (of course). The basement project is coming along and we’ll now re-focus some attention there, if we can get someone to watch Vic while we pound out some frustrations in the basement. Vic has been in school now for several weeks and really enjoys being with the other kids. I continue with weekly yoga and Gary regularly swims. Hopefully, we’ll have a chance to go on a date soon too!
Life sure is a mystery! 
Next Update: After Thanksgiving, if not before then.
FYI: we have the ability to video chat with our cool new MacBook. I “chatted” with my sister in Mexico for 2 hours. If you can video chat too, let us know so we can set up a chat time.
Ay, caramba! It’s already the evening of Labor Day and only now am I finally able to update Vic’s blog. It sure has been a busy summer; filled with fun and peaceful moments with friends, interesting obstacles for Victor (and us), and back to the basement for Gary.
My last update was just before the 4th of July, which was fun, 
indeed! The family took in some local patriotic tunes down at the Locks and then we hosted a small BBQ/cocktail hour with friends and neighbors. We even stayed up late with all the kids, taking in the Lake Union fireworks (seen from our bedroom window). Following the 4th, came a return trip to Whidbey Island for Victor and I, where we spent the weekend with our dear friends, taking in a local street fair and walk through the woods while Gary moved the gas line. Don’t worry…all is well, Gary did a great job and even had the gas company inspect his work (for free!).
The month of July remained busy with our typical Vic appointments, school, work, and Mom & Dad time (yoga for Mom and swimming for Dad). Thankfully, though, we were able to round out July with a special visit from friends we hadn’t seen in awhile 
and walked to our local Ballard Seafood Fest.
August started out on a fun note; literally, as
we took in the last of our Summer Zoo Concerts on a perfect Seattle evening listening to Bela Fleck & the Flecktones. We also made time for ourselves by taking a weekend to enjoy some things outside of Seattle. We took Vic to the very small Cougar Mtn. Zoo and then to Snoqualmie Falls. Vic was a bit lethargic that day but we had a great time, leaving the city! The next day, after waiting in a very long ferry line out of Edmonds, we went to Kingston and meandered around Port Gamble; an old mill town with very quaint buildings and hardly any foot traffic (a bit Steven King-ish). We then ventured down to Bremerton and walked around the coolest ferry landing in WA while waiting to board (who knew!). The ride toward the Seattle skyline was absolutely gorgeous! 
During many of our weekends, however, Gary worked diligently in the basement while I entertained Vic. Out of one weekend, we even got a new staircase leading to the basement from the front hall; an exciting accomplishment! In spite of the loud sounds, Vic 
was actually able to nap and had to be woken up! This past Labor Day weekend turned out quite nice, despite not having made any plans. It was basically a weekend at the park(s. Gary toiled again in the basement while Vic and I spent the day at Myrtle Edwards Park. Sunday, the family headed to Greenlake, wher
e I finally had a chance to rollerblade and Gary walked Vic in our new $10 bargain jogger. We later walked around searching for blackberries when I realized, that’s exactly how we’d spend our Labor Day. Today, we headed to Seward Park where our mission was to fill our bucket with blackberries and we came pretty close. For dinner, we ate at Uwajimaya and I slurped down a bubble tea for dessert (ahh). Not a bad weekend to begin our September, considering all that we’ve gone through with regards to Vic. 
Sometime in mid-July we got results from a food allergy test we did for Vic. The results are quite daunting, as just about 80% of his Keto Diet needs are dependent upon dairy and dairy is at the top of his reactive foods. Coming in at #1 is soy! In all, Vic has about 16 foods that negatively impact him in some way but of course, since he’s non-verbal we don’t know how those foods affect him. For one, we decided to cut out the dairy and within a week we noticed a big difference! Here’s where I get graphic…Vic finally has solid stools. Vic seems more comfortable and is certainly less gassy! However, it has not been easy adjusting his diet 
w/o the dairy, as we’ve ha
d to replace ALL of the dairy (which is high in fat, fat is the crux of his Keto Diet) with oil. It has taken us about a month playing with various oils and he still had a difficult time digesting the ¾ cup of olive oil, he ingests per day. The amount of oil makes for a very urpy Victor and slows us down a lot, as we can’t simply jump in the car and go following any meal.
Aside from the diet, we discovered the importance of one of Vic’s meds (lamictal). One week ag
o Vic stopped taking Phenobarbital (yippee). From pulling the PB away, we also pulled back on the lamictal and noticed a horrible outcome from the slight wean. The good thing is that when we put him back up on the lamictal, his seizures weren’t as strong or as frequent. We’ve also recently altered the time of day we give his meds and today noticed him to have only 1 brief strong seizure and a few mild quick ones. We’re keeping our fingers and toes crossed!
Through all of this, Vic had a growth spurt and is about 34” long, 26.5#’s and is now working on the 2nd of his last 4 molars. This teething business is clearly impacting him and driving us nuts. We have felt each of those teeth come in! At this point, I need to call it a day! 
Look for my next update, following the start of school and our trip to Reno/Tahoe to visit my family.
Next Update: sometime early October
It’s already July and Victor is now two years-old! He had a wonderful time at his hoedown held June 10th at the Leif Erickson Hall, down the street
from us. About 50+ guests enjoyed dancing to the fun Cajun band and noshing on sandwiches and cupcakes. We had a great time; reconnecting with people we hadn’t seen in a very long time…it was all-around a good time filled with great memories for us. THANKS Laurie, for putting it all together and THANK YOU to everyone who contributed!
June proved to be as busy as we expected. Early June, another of my sisters; Noellyn, came to visit. She came during Vic’s actual birthday and was able to join Gary & I (along with other friends) for Vic’s Seattle Film Festival debut. It was fun to actually be a part of the film festival and see us playing with Victor on a huge screen. We also enjoyed cocktails post-film with friends.
Later that week, Victor & I made it up to Whidbey to visit our dear friends; Dana, Vada & John. They surprised us with a beautifully decorated ice-cream cake in celebration of Vic’s b-day. We had so much fun with them that Vic and I didn’t return home until 10:30pm!
The rest of the month has been quite busy with work, school, therapies and multiple appointments per usual. But we were able to round out the month with two outdoor zoo concerts (with Brian, Yvonne & Conor), support the Ronald McDonald House by drinking beer with our neighbors and fit in some "Gary & Laura" time with friends at a nearby hip restaurant. THANK YOU Rebecca, Kristy & Powell!!
We are delighted to share photos of Victor wearing his new glasses. They arrived the day before his birthday and he tolerates them quite well. Although he doesn’t lift his head the way I witnessed at the doctor’s office, he certainly seems to focus better and really takes in the world around him. At a very recent follow-up appt. (this past week), the doctor was very pleased to see Vic in his glasses and performed a small series of tests with another set of prism glasses over his current lenses. Sure enough, Vic lifted that head up and loo
ked around the room. He seemed very pleased with himself. The plan for now is that the prism lenses are on order for us to use at home (with the advice of the doc) and during his Vision group at school. For those of you not familiar with prism glasses, the lenses are thicker at the bottom than at the top. They force the eye to look upwards. The type that are on order are meant for testing/therapy at the clinic, as the lenses are enormous and may be rotated in various directions to train the eyes. Vic’s current glasses are also prism glasses but the power is only a 1/3rd of the training lenses.
MEDICAL UPDATES:
MRI & Spinal tap- The results showed that Vic has a loss of brain matter but he is myelinating at the rate of a typical 18-21mo old. The spinal fluid test showed that he is not missing any neurotransmitters.
Chiropractic-Vic has had 5 adjustments since he began at the beginning of June. It is too early to tell whether the 
chiropractic has helped control seizures or aid with his motor delays, but we have seen a reduction in seizures and an increase in him lifting his head.
Cranial Sacral- We continue this treatment on a weekly-basis. It is also difficult to know how much he is impacted by this, but we feel that it does help.
Phenobarbital- Vic is now at 15mg/night.
Pyridoxal Phosphate- According to one of Vic’s docs. This vitamin is widely used throughout Japan as a first line of treatment for kids, like Vic, whose Sz’s are harder to control. We started this today at 1/3 the advised dose and will gradually increase it. We are testing it for about a month, before we’ll know if it’s doing anything for him.
Reiki-I continue to give Victor Reiki just about every time I hold him. Having this gift has helped me so much in how I cope with Victor’s issues. It is so wonderful having something that I can do directly for him, helping not only Victor but myself and Gary also.
Seizure Update:
Being Mr. Predictably Unpredictable, Vic’s Sz’s seemed to have changed literally just after his last EEG
. While his Sz’s appear to have lessened, we witnessed one absolutely horrendous Sz that lasted just shy of 5 minutes. It was one; we had never seen before and left us unsure if we might have to call 911. Seconds before we were about to administer Diastat, he finally came out. This Sz was so disturbing that I was unable to eat dinner and go to yoga that night; it had exposed the same feelings I had when we were first in the hospital doing tests.
However, since that horrible night, Vic’s stronger of the 3 types of Sz’s he has, have decreased. It’s almost like he peaked and he’s on his way down (just my feeling). While we don’t track Sz’s like we used to, we’re guessing that his Sz’s have decreased to about 2-5/day with some quick twitching-like Sz’s. He even had a day where his first Sz wasn’t until 5:30pm!
Currently, we are in the midst of changing Victor’s entire school/therapy schedules. For months, we’ve struggled with juggling everything against his strict diet, his constant reflux and his naps. Finally, we will have Victor on a morning schedule whereby school and therapies will start at 9am each day. Hopefully a more regular schedule will allow him to rest and recoup as is so vital for him!
NEXT UPDATE: Early August.
The photo to the left shows Vic's new toy/communication learning tool. With some of his birthday money, we bought him a red button, bubble machine and power link. When he hits the button, it activates whatever is plugged into the power unit; lights, a fan, music and his special bubble machine. He played with this while we worked in the yard for over an hour and loves the bubbles! THANKS EVERYONE!
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 mo
nth 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)
It’s amazing what can happen in 7 weeks! We’ve done and been through so much these past weeks that I can hardly think of where to begin retelling it. Let’s see….following Labor Day we’ve plugged along with Vic’s weird(er) diet. Vic already had trouble with keeping his food down on the diet but with the replacement of dairy to oil, he clearly has issues with it. With the inception of the oil diet, it has been even more difficult on his system, leaving him crankier and urpier than ever!
to just lay him down to sleep. Regardless of how tired we knew Vic would be, he would wake up multiple times through the night. Gary had been living on 4-5hours of sleep each night! Two weeks ago, after several nights in a row of trying to give Gary a break, I finally phoned our nurse and told her that we are at our wits end. We’ve been unsure as to whether he’d been having seizures 
in his sleep, causing his sleeplessness. I wasn’t sure if we needed to do another overnight EEG study. She suggested we do a sleep study to see if he is having apnea of any kind and perhaps another VEEG. We are still waiting to hear as to when/if either will happen.
h we stayed in a nice resort in the privacy of our own apartment, the trip for us was extremely difficult. Victor was so sensitive in every way, leaving us unable to relax, especially Gary. Vic was still having trouble keeping his food down and was more sensitive to oral feeds than he had in the past. With the stress of travel, in general, Vic’s health issues impacted our ability to fully have a good “vacation”. 
and we opted to get home ASAP. We gave him an ativan to calm him down and thankfully, he did.
ter, he was able to take in some food through his tube and keep it down. We skipped school the next day and I monitored him. It was as if nothing had happened; he was smiling here and there. I contacted our nurse, told her our story and requested that we test his Lamictal level. We weren’t sure if the lamictal had indeed spiked and had caused all of this commotion. I took him in 3 days later for labs. The results showed that his lamictal level was ok but he had lost so many electrolytes that he was in a fatal state. Basically, had we not requested a blood test for the lamictal, Vic could have had a heart attack and died! The solution: salt water. Since we had changed his diet, he apparently was lacking the sodium he needs, causing him to have an upset stomach worse
ned with all of the oil. In a matter of days, the salt water has made a huge difference! He is not puking like he was and he is actually quite happy.
had an enormous seizure! The night prior he had hardly any sleep at all, falling asleep at about 7am. I let him sleep until 10:30, woke him up for breakfast and while he sat in his highchair, he convulsed like I’d never seen. Meanwhile, Gary was outside working on our fence. I knew this seizure needed Diastat—no watching the clock, I just had to give the emergency med. I grabbed Vic, ran to his bedroom, yelled out the window for Gary and started to Diastat him. Gary finally came in, we gave him the med and Vic eventually calmed down (me too) and went back to sleep. It was horrifying! I really thought it was going to be a 911 situation. Vic slept that afternoon until 4pm and eventually slept through the night! Gary canceled his retreat. 
After dealing with that situation, the past 2 weeks have literally felt blissful. We did another blood test and found that his electrolytes have stabilized and his lamictal did spike. We regularly give Vic salt water and are weaning him slightly from the Lamictal to get him to a level that is safe for him. He is sleeping more regularly and napping but we do have intermittent days. He has been happy—and I mean, like any baby is. He has been so happy and giggling, it is such a joy! To see him
smile and giggle at the things he sees or does, gives me the most tremendous feeling of gratitude that I can hardly express it here. Our little guy is so strong, it amazes me what some people (including myself) complain about and I look at this child and think, “he is a miracle”! He is showing me how to love more than I ever thought I could, how to be patient and how to appreciate the life and health that I have.
utting in a fence adjacent to the crazy rental house. We are now searching for a dog for Victor. Eventually, we plan to fill the side yard where the new fence is, in with woodchips and make it a dog run, where Gary also plans to build a 
shed and dog house (of course). The basement project is coming along and we’ll now re-focus some attention there, if we can get someone to watch Vic while we pound out some frustrations in the basement. Vic has been in school now for several weeks and really enjoys being with the other kids. I continue with weekly yoga and Gary regularly swims. Hopefully, we’ll have a chance to go on a date soon too!
