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December 4
We're back from a few days on the coast. Thursday morning was Luke's annual EEG at Children's Hospital. We stayed up until midnight the night before and woke up at 5am. The 2-hour drive (traffic is horrid) over the Port Mann bridge to the hospital was spent keeping Luke awake with tickles and the IPad. Once we arrived, he was a little over-tired and cried when the technician put red marks on his head. He was quite upset, but after a bit, he calmed down with my help. We sang songs and he slowly relaxed enough for her to put the paste and nodes on. After the lights went down he finally drifted to sleep so they could record him dozing off and waking up (that's when seizures often occur). After he woke up, they did the strobe light test and then it was over. The nodes came off, his hair was gently washed and we were good to go.
Our 10:30 appoinntment with the neurologist did not happen until noon... as we expected, but fortunately we did not have to see a nurse first and wait an unendurable amount of time in a small room with an overtired and cranky kid. We met with her immediately and were as cordial as possible. She noted Luke's improvements and stated that his EEG was the same as last year, no seizure activity recorded but still a slightly abnormal EEG. She recommended that he stay on the medications for 1.5 more years. We decided that was okay, even though we had hoped to begin the weaning process. I asked her opinion on neurotherapy just as a lark because she's so pro science and double-blind testing. She had some patients that were seeing Dr. Swingle but with no real results. She said there's no science to prove it's effectiveness. My husband then said, "There's a lot of things we've done that are effective despite scientific research". She was curious what we'd done, so we said the MOST effective thing was Oxygen Therapy. She noted this in Luke's file.
The most exciting part about meeting with the neurologist was when she questioned Luke. She asked what Grade he was in, and he said "Grade One". She asked if he had any friends, and he said "Tristan". She asked him to spell his name, and he picked up the pen, and with coaxing to hold it correctly, wrote "Luke" in his own special undecipherable printing (although the "e" was awesome). She asked him to count to ten, and with very little prompting complied; and he also counted how many books were on the table (6). His responses were amazing, and dad especially was blown away by his quicker-than-ever processing time. It was a very good appointment and we were so proud of him. He repeated what we said a couple times... "I was awesome in there".... haha.
We do not have to go back until May 2013 after which we will begin to wean him off the medication. Woo Hoo.
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The next day, Friday, we met with Dr. Sass who was equally impressed with Luke's cognitive abilities and quicker reactions. He complied with all the "games" the doctor requested. Luke was able to say what type of animal he could see, or complete the shapes puzzle, or follow a laser light, or pick out the objects in the colour blind test. The doctor had a puzzle which Luke did easily and then he lifted it up above Luke's head and asked Luke to find the "star" and he put his hand above in the correct spot (he could not see the top of the puzzle). Then the doctor spun it around twice and asked Luke where the star was, and Luke looked in the spot where it would be if it had spun once... despite the fact that this was the wrong spot, the doctor thought Luke was smart... clued in that it had moved. Impressive. The other amazing thing was Luke's astigmatism had improved. He was focusing better. As a result, Luke doesn't need glasses for the time being. I was sure he was going to prescribe them again, but he didn't. Yay... don't have to worry about where the glasses are and if Luke's wearing them. That's a relief.
December 26
We are all home for the Christmas holidays, and enjoying some quality family time. Luke's not quite understanding why he doesn't go to school, but he's not complaining either. He's actually a little bored I think; and therefore a little annoying, haha. We've been playing a lot of Wii (Luke still has a hard time coordinating but still tries!!!) and watching movies, etc. Turns out he loves The Grinch and can watch it over and over. That's fun. He was also up with his little brother Joel at 3am Christmas morning... driving me crazy; so we watched cartoons until daddy woke up. Even though he was quite cranky from lack of sleep, he participated more enthusiastically than ever in the present opening. He did not seem to care too much about the contents, as usual, but did end up playing with the angry birds a bit; as well as his new ZhuZhu pet, Jinx (hamster)... who has since gone missing (sigh). He's getting excited for Mile High (we're going for 6 nights) because he loves toboganning. He keeps telling me "I'm going to go really fast." The other neat thing he did the other day was to come and see me after I came home from grocery shopping. He looked into my bags and said "What did you get?" then he said "I'm going to carry it" and he picked up one bag and brought it upstairs to the kitchen. I was so impressed and proud. Joel did it the next day (to receive the same praise) and I was pleased with my two boys. Yes, I know it won't last, lol.
We had our family Christmas on Friday December 16 and it was at my sister's house. I was a little worried about how the boys would act staying up fairly late and with 25+ really LOUD people... but I did not have to worry at all. They were both so well behaved... family members commented on how well Luke was doing. At one point we couldn't find him, and he was playing with his little "cousin" in one of the bedrooms. After a while he came up to me and said "I want to play with Kallie" and I said, "Go ask her" and he did! It was so cute. A week later at my other sister's house we couldn't find him either... but someone had heard him say to two little blond boys "Let's play downstairs" and that's where they were. Way too cute. It's interesting that these kids are quite younger than him, so perhaps he's more on an even level with them.
The last few weeks of school went very, very well. Luke participated in the Christmas concert / play and ended up centre stage in his shepherd costume. While he did not do as many actions as he knew, he still stood still and smiled. He seemed to enjoy himself on stage. We were all very proud of him. The last Monday of school many other teachers came up to Ms. E. (his support worker) and commented / praised her on how well-behaved Luke has been and what a change and such progress since the beginning of the year. A completely different child. This was such a huge relief to me as it was touch-and-go whether or not he would be able to cope / stay there. Way too much stress for me. I am happy to start a new year with both boys enjoying school and being as well behaved as possible. Joel will attend 3 mornings a week (as opposed to two in the fall). We also met another support work in church on Christmas Eve... he came up to Luke and introduced himself. He seemed to like Luke and it was nice to meet more of the KCS staff. Luke, BTW, was AWESOME in the 45-minute-long service (first time sitting during the whole service). We had to leave once to go to the bathroom and get a drink from the fountain, but otherwise he sat fairly still (pushed buttons just a little). He even clapped along with us while singing some of the songs. I was pleased. There was another couple sitting next to us with two rambunctious little ones and I was happy that we were passed that stage. Yay.
We visited Ms. Alice Ross again and are contuining with the flashlight eye tracking exercises. We will meet with her January 9th for a new reading program to begin. She will not accept money for her help, so we brought a nice poinsettia arrangement for her table.
Happy New Year everyone!
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