Even though times can be hard along this HH journey, I think, we have to stand back at times and think, No that was a good week, day or even just a morning.
I have to say the last week has been just that–Good. Faith has seemed so much calmer; she’s been a typical 5 year old. Full of life when she comes home, telling me at double speed about what has happened at school. She’s had her times when she’s argued over something but it’s been a normal situation and one I’ve been able to deal with and rationalise with her.
When I look at what’s been different, we have reduced the lacosomide– she is now on 5.5mls twice a day (55mg). I have made sure when we need to do something outside of her routine she has a pen and a hand held notebook, to draw on. Saturday I took Emily (my middle daughter who is 12yrs old) to town. The eldest was out with her friends, so that just left Emily with Faith and myself. Normally this would be a traumatic experience for Faith and us, but I talked to her before we left, as I could see a little spark of agitation brewing in her. I explained what the plan was for the morning and that I wanted the three of us to have a nice morning and that if she wanted to she could sit in her buggy and have her colouring on her lap. We talked about her ‘mood’ and that if she could, she needed to tell her ‘mood’ that she wanted a nice day. Something worked, when we arrived at town, she got in her buggy held her notepad and was generally happy all morning.
She also started rainbows (which is a younger stage of guides)this week. Her friend went with her and the rainbow leader had agreed that either Katie (my eldest daughter who is 14yrs old) or myself could stay in case Faith needed us. Katie had decided that she would rather if it was her that went with Faith, as the other mums wouldn’t be staying. This went well, she loved it, Katie said she had one gelastic seizure when she was there, but just turned to her for comfort and then carried on with the activity. I felt so happy, when I dropped her off at the hall, seeing her participate in something normal. We have tried dance lessons before now, but even though she loves dancing, she found the organisation of it all a bit too much. When they had to change over shoes from ballet slippers to tap shoes, she couldn’t get to grips with having to change her shoes and just became over anxious and didn’t want to go back. I haven’t enrolled her in swimming lessons because of the seizures and having to be in the water with her all the time and finding a group suitable to allow this. So this was great to see her go off with her little friend and enjoy something normal with her peers.
I don’t know if it’s been an accumulation of the reduction in medication and the way I’m dealing with her emotional welfare that’s made the difference, or are we just having a good spell. Who knows I just hope it carries on.