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)
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)
