![\"IMG_5128\"](\"http:\/\/blogs.oregonstate.edu\/oregonketokids\/files\/2016\/09\/IMG_5128.jpg\")
<\/a><\/p>\nFor a fun treat we’ve recently found the “Coconut Bliss” brand of ice cream, which is around a 1:1 ratio. \u00a0Nora loves it, and I admit I feel a great delight in allowing her to enjoy an off the shelf ice cream product without much restriction. \u00a0It has 17g of net carbs per serving, which would have been much too high to fuss with back when Nora was restricted to 10 g of carbs per day, but now I feel comfortable with her having it due to the 19 g of fat that goes with it. \u00a0(As an added bonus, it’s made nearby by a\u00a0Eugene, OR company.)<\/p>\n
Nora has grown tall and strong, with absolutely no signs\u00a0of any growth delay she may have had while on the carb and protein restrictions. \u00a0As I type this, she is swinging and climbing\u00a0in a small tree in our backyard, like the primate she is.<\/p>\n
She does struggle with certain abstract concepts, such as music notation, analog clock reading, and mathematical procedures. \u00a0Of course these are not unusual struggles for any kid, but I would say Nora seems to struggle just a little more than average<\/em> — whatever that may be — with these sort of abstractions. \u00a0I wonder sometimes if these minor struggles are related in any way to any cognitive delay that would have been related to the epilepsy, as myoclonic epilepsies are usually correlated with cognitive delays or regressions. \u00a0But I feel there’s really not much evidence of that; it’s quite likely that Nora is just a very normal kid with some strengths and some areas to improve. \u00a0Watching her develop I’ve never lost the gratitude that she is doing so well. \u00a0I will never take her health for granted.<\/p>\n It was about one year ago I wrote a post about Caring for the Caretakers<\/a>. \u00a0Nora’s epilepsy really took off in the fall of 2011, so I think I associate the fall with those difficult times. \u00a0This fall I find myself thinking of it again, about our journey and also about those that are still struggling or will soon be sent tumbling\u00a0down that path. \u00a0So again we want to remind our fellow parents and families that you are not alone. \u00a0Epilepsy can be\u00a0so difficult, and scary, and unfair. \u00a0It is OK to acknowledge how hard it is, how scary, how unsettling, how frustrating, how limiting. \u00a0When we are hurting, we must take some time to acknowledge our pain, and also to have our community and supporters acknowledge the pain.<\/p>\n To all the parents and caretakers and families out there, I\u00a0say: I am so sorry this has happened. \u00a0I am so sorry this unfair and scary thing has set upon someone you love. \u00a0I am sorry it hurts. \u00a0Cry and rage if you need to; give yourself space to acknowledge the hurt.<\/p>\n When you’ve had time to be with your pain, pick yourself up and put one foot in front of the other. \u00a0Keep going. \u00a0Each difficult day you make it through is one less you’ll have to deal with. \u00a0If you are in the midst of a miserable time, remember that it will not last forever, there is a better day out there in your future, for you and your child.<\/p>\n We are here to help. \u00a0Please leave a comment if you need an encouraging word, or a space to vent. \u00a0No one is alone in this.<\/p>\n","protected":false},"excerpt":{"rendered":" The end of summer is upon us; Nora and her brother will be starting school this week, with Nora entering the third grade. It’s been a good summer. \u00a0Nora has been healthy and happy, enjoying countless hours listening to audiobooks … Continue reading <\/a>Cognitively Nora is sharp and very strong\u00a0with language; she has a very large vocabulary and greatly enjoys mystery books and theater. \u00a0She speaks well and reads well. \u00a0She’s a natural organizer.<\/p>\n