Teydon had an EEG this morning, we are checking to see if he has Lennox Gastaut syndrome or not. I felt so bad for him, he could only sleep for 6 hours and had to be woken up at 4 in the morning. He was so sleepy! Only took him 5 minutes to fall asleep once they were finished hooking him up to the EEG. The test only took 10 minutes once he was asleep, he was having so many seizures that they were able to get enough information in just a short time. Not really the best thing but made the test shorter. We were told it would take 20-45 minutes. 10 minutes did not make for a very long nap. We will have the results back by Monday or Tuesday.
Teydon is still have around 20 drops a day, some lasting a split second, others a minute with disorientation afterwards. He's having 1-2 grand mals a week they happen in early morning non during the day. And all day long absence, where he zones out and doesn't really respond for a few seconds. Just spend a few minutes with him and you'll see them. Things are better than in January, we figure he had around 150 grand mals in a 3 week period, plus all his drops on top of that. Some days are better than others, worse when he's had a grand mal. Its a constant worry and watching over him. We truly believe he was sent to us for a reason, he needed us to watch over and take care of him. We love the little moments when we get to see his smile and hear his laughter!
Schooling update. We met with Teydon's team on May 19. There were 9 people including Dan and I. We met with them for 1.5 hours discussing Teydon's seizures, his mentality, and his needs with seizures and schooling. We left feeling very good about things. He has a lot of people looking out for him. The plan for now is he will go to kindergarten in the fall, he will go for an hour or two early for speech therapy and extra teaching to help him learn things he misses out on when he's having his absence seizures. They were very understanding and willing to work things out with us.
They scheduled to have some testing done, cognitive, motor skills, and communication. We had his cognitive testing last week and he didn't do very good, it was a rough day for this momma. The tester said he couldn't give him a score because of all his seizures, it wasn't a fair test to test Teydon's IQ. It was so hard to watch and to hear. I knew he was struggling but it was so much harder, as his mom, to be told he pretty much didn't score. Broke my heart!! At the same time it was good to have a professional see how much Teydon is struggling to help get us the help that we need for him. The tester said that maybe a life skills class would be better for him. More one on one attention and help. Which I have been wondering if it would be better for him, right now anyways, instead of a regular class room. They can't just put him in the life skills without having the testing done. They are going to retest him middle of August before school and see where he is at, if anything changes seizure wise. We also will reconvene with his team before school starts to discuss any changes and final preparations.
Things are definitely going a lot better than last year. I've come to the conclusion, for whatever reason, he wasn't suppose to go to kindergarten last year, maybe because Januray was going to be so rough he wouldn't have been able to attend school at all, who knows. Things are working out for next year so we are working on that now. We are so grateful for answered prayers in getting us some help with his schooling.
Thank you all for your continued love, concern, and support! We are going to do a fast for him this Sunday, June 4, if anyone would like to join us!
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