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 9th 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
