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 afterwa
rds 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 8th 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
