Overall, since Mason had brain surgery in Sept, 2005, his seizures have been minimal, allowing him to start to learn again. They have had a very gradual increase and the years have gone on, but nothing of concern. Over the last year they have been increasing a little more rapidly, but I think I've been in denial about it because he has continued to learn and grow developmentally. Over the last months they've fluctuated quite a bit, often because of his new anxiety issues. Over the last few weeks they've increased sharply. Especially at night. He actually screams with each one. They really freak him out. They are sharper and much stronger than they have been. He is also fully aware while he's having them. Before surgery, he would lose all awareness and a portion of his memory before, during and after a seizure. So this is why they are scaring him. He's fully feeling and remembering them. He's up once or twice each night, anywhere from a few seizures up to 10 or 20, sometimes lasting 30 - 45 minutes. We started going up on his medication a couple of days ago. The screaming has stopped, but the seizures haven't. I'll probably increase it again in a week. Other than that we don't have options. He's been on everything. The med they may want to try next has bad behavioural side effects, so I don't think I want to go there.
In spite of the increase in his seizures, Mason is still progressing! He is stringing words together on a regular basis! Last week we, as a family, were at Dairy Queen, enjoying our ice-cream. The girls were bickering a bit when suddenly Mason looks at Asia and says in a stern voice, "Asia, be nice!". We all burst out laughing in surprise. He comprehended what was going on, AND he articulated a full sentence!
Other stories:
Easter weekend - the kids and I spent a couple of nights down at the trailer. Our neighbors, there, were out as well. Their kids are the same ages as ours, so they hang out/play together. Something very exciting occurred that weekend. As I sat around the fire at Adrienne and Luigi's trailer, Mason and Nick (their 12 year old son) played together. Kicking balls, finding sticks, etc. The really neat thing is that the two of them wandered off to our trailer and back and into the bush and generally were all over. And I just stayed at the fire enjoying the company of my friends!... without worrying about Mason! He's come along enough that we don't have to have him within constant sight! He can go off and play like any typical little boy!
We also had an Easter Egg hunt down there. What a hoot watching six kids looking for plastic eggs all over our campsites and in the bush! Three of those 45 plastic eggs are still waiting to be found! Us moms couldn't remember where we put them all!
Gate-Free!
We have also taken the gates off in our house! First time living without gates! That means Mason can go upstairs any time he wants. Although in reality, he wants to go up less often than when the gate on the stairs was on. 'The grass is greener....." When he does go upstairs, he goes on the computer or off to play air-hockey. He knows he is not to go into the girls' bedrooms, but he will if he's chasing one of the cats!
Gates off also means he can now go into the kitchen any time he wants. I've put a little flip-lock on the pantry door to keep him from scrounging for food. It only took him two days to figure out how to open it! He got a plastic cup to help him reach the lock and pop it open. He's a smart kid!
Imagine Ministries: (imagineministries.ca)
Mason LOVES going to church now! He loves his Imagine class and his caregivers. We now have 6 kids attending. Two that are integrated into their peer classes. :) More plans are coming for Imagine!
May 2/3 weekend services at Northview. At the end of each service, there was a group of 25, or so, of us doing 'cardboard testimonies'. Click on weekends at northview.org, then messages to watch it online. I was up there. The first side of my cardboard, in the shape of a puzzle piece, said, "Our son, with medical and special needs"... turned the cardboard.... "IS created in God's Image". I tried to get Mason to go on with me on Saturday night, but we had to go past the drums and that was too loud for him. Daryl brought him Sunday morning to the last service. I watched Mason in the doorway as he clapped and cheered, along with everyone, as each person turned their cardboard. After we were finished and left the stage, I gave Mason the cardboard. (he thought it was his the night before). They were singing one last song and Mason wanted me to go back on stage. I thought he just wanted to go up to the front, as other people were going up with their mini puzzle pieces. We came back, then he decided he wanted to go up the center isle holding this big cardboard. He just stood there, watching. I was amazed, as he usually bolts from the main sanctuary. ( I could have tried to get him back, but he probably would have ended screaming a lot). Then when the service was over and almost everyone was gone, Mason decided to go onto the stage. He stood there with his cardboard watching the worship team pack up. He told me to sit in the front pew and watch. So, once again, I patiently waited. It was nice to see him comfortable in church! :)
Coming up:
May 26 appointment at Sunny Hill Hospital in Vancouver to assess Mason for Autism. His psychiatrist saw some signs of it. If Mason does get the Autism diagnosis, that will mean more funding and help for him.
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