Thursday, January 19, 2017
Balls, braces, bedrooms and books
Rachel and I headed into town after lunch. It was a blessing having Arianna here to help with the younger children as Brendon didn't need to take the afternoon off. We had a few errands to do including having both our eyes tested. I'm and AA member now and can have a free eye test every 2 years. It made me realise I haven't had my eyes tested as an adult - so it was good to know they are fine. Rachel's have improved since she last had them tested (and got glasses).
Although she is still very slightly short sighted (so she can't see as fine details on the mountains way ahead), she is perfectly fine for driving.
Then we headed to the orthodontist and got some very exciting news. Rachel's braces are coming off in just over 2 weeks time, on Friday the 3rd of Feb.
So it was a big decision today about what colour elastics to choose - as these are her last ones. She went for turquoise which matched the top she was wearing beautifully. :-)
Tuesday 17th: I was really impressed this morning when Ruth managed to get Asher to put these shapes on in their colour groups. She has always only every put them on in their shape groups, so it was wonderful to see her willing to allow Ruth to direct a change to her game.
Rachel and I worked a bit more on the bookshelves in the garage this morning and made this tall one available for Rachel to use in her room. She had fun today taking a whole lot of books out to her room (thus helping clear a bit more of the lounge book shelf).
At 6:45 Asher had a 1 minute Tonic Clonic. She went really blue through it, so we were thankful it was short. It was so close to bed time that she just went to bed early.
At 5:30pm, just as Arianna headed out for a dinner with new friends, Asher had an 8 minute Tonic Clonic. I had hoped that she would eat something after the hour sleep, but she was just too tired and went to bed early.
I had a bit of an emotional week as we made the call to stop the new drug that we started at the beginning of December. Although she only had 5 seizures in December, I think it may have just been a reflex reaction of the body to the drug. She had 5 seizures in just the first 10 days of Jan. The doctor wanted to increase the dose, but we feel the side effects are just not worth it. She had such incredible pain last week with the 12 minute seizure (details at the end of this post). Her behavioural issues have also gotten worse through this week. The doctors says it sounds like anxiety. She is waking between 12 and 1 every morning to come into our bed and won't even stay with Brendon now but just cries for me. I was also concerned that she may be getting some blurred vision from the drug too. So we asked the doctor today how we can wean her off. We have dropped her down to half the dose and after 2 weeks we stop.
NOTE from 28 Jan: This has proven to be the right decision even during the weaning off weeks. Behaviourally she is doing much better. She is being much more friendly and is accepting of others again. She even stayed in her bed till 3 last night - hopefully once totally off that will continue to improve. Her vision has also settled. The issue with her glasses has disappeared. When on the higher dose she would often have days where she would constantly take her glasses off. That has stopped now too.