Sunday, January 29, 2017
Library party, seizures and friends
At 8:45am she had a 1 minute Vacant seizure. She didn't sleep afterwards and then at 9:15 she had a 1 1/2 minute Tonic Clonic seizure. She then slept for 2 hours.
After lunch Ruth and I headed off to the Library Summer Reading Party in Amberley. They had a juggler entertain the children (and adults).
It was quite something to see him up on this high unicycle. And then he got this girl to throw the batons to him. They had practised this throwing before he went up.
He had not however, given her a practice at throwing the "blade". So the first time was a miss. It's a lot heavier than the batons. She managed on her 2nd try though and it was great to watch.
I got a bit concerned about Asher needing to sleep so long and she also didn't want to eat. So I called our paramedic neighbours and they came over to show me how to test Asher's blood sugar levels. She has her own device for when she starts the ketogenic diet, but I thought it would be good to just check it now. We don't have her base line, but it was sitting at just 4.6, so we knew we needed to get something with glucose into her. The neighbour suggested a shake (with banana in) - much easier to get in with her not wanting to eat anything.
Sunday 29th: She woke just after 7 and within a couple of minutes (that we hadn't even gotten out of bed yet) she had another 1 1/2 min Tonic Cloinc. So I tested her blood sugar again and it had dropped to 4.2. So although not dangerously low (which I only learnt from the dietitian the following week), it made me aware of the importance of getting some carbohydrates / sugars into her. So as soon as she stirred (not letting her sleep for an hour), we got her to eat a few small pieces of pear.
Thankfully she was happy to eat an almond biscuit on the way to church (which is just almond flour, maple syrup and baking powder). The maple syrup being the main ingredient I wanted to get into her.
We could literally see her blood sugar levels correcting through the morning as her energy levels came up. So that was a relief. It made it very aware of how necessary our stay in hospital is for getting her onto the keto diet, and for going slowly so that her body has time to adjust.
Photo taken at church in the foyer where she plays with her balls. She still had a few small jerks through church, so I was really thankful we didn't have any more seizure through the rest of the day.
His friend brought his bike down. Hezekiah had a go on it. It's just a little bit smaller than Hezekiah's bike, and is a much better fit. Hezekiah did really well (even on the grass). So hopefully his legs will grow a little bit over the next couple of months and then his own bike will be that much easier to ride too.