Sunday, January 29, 2017

Library party, seizures and friends

Saturday 28th: Asher started trying to sort these animal dominoes this morning, so I showed her how to line them up with touching the "same" pictures. It's the first time she has really shown interest in the pictures, so it was encouraging to see her accept this new game. Before she would just unpack and pack the box. :-)
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.
Then time for certificates and prizes. A friend was there with her 5 year old. I didn't realise they could be a part of it at such an young age. They don't actually have to read the book themselves. At that age they can just listen to a book read to them, and report to the librarian and tell them about the book. So I will hopefully get Hezekiah signed up for the next one. And I think Hannah will be motivated to do it too. :-)
Ruth was again one of the winners in the colouring in competition. This year they had a whole display of books that they could choose from as their prize. She chose this book that encourages many forms of writing. I look forward to seeing what Ruth creates.
At 4pm (while we were still out) Asher had another 1 1/2 minute Tonic Clonic. She went very blue with it and then slept again for another 2 hours. When I got home I found these two sleeping. Asher sleeping off her seizure effects, and Brendon sleeping off a migraine. This is one of the two regular positions that Asher sleeps with me from early morning. Brendon had to sleep on my side of the bed for her to feel comfortable. So hard to see these two struggling so much.
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.
I had given Asher a keto shake for breakfast this morning. The dietitian had given us the shakes to try, but I didn't realise it was just for a taste, so just giving her a bit as part of a normal meal. So it may be that this in combination with her finally stopping the other drug, just through things out of balance for her.
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.
During lunch I told Hezekiah that once he was finished, his friend from up the road would come and visit. That was all the motivation he needed to get finished (it was a meal he doesn't like all that much). They had a great time playing this afternoon. Brooke came over too and enjoyed some time with the girls. With school starting for them on Tuesday it was good to enjoy some time playing with friends in these last holiday days.
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.

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