Tuesday, January 24, 2017
Cats, cars and Ketones
Monday 23rd: Tobias came around this morning to help change the door on the container. The previous one had taken on so much water and was just never going to be normal again. So we were thankful for a nice dry day to get this done.
Out with the old.
And in with the new (2nd hand one). Tobias actually had quite a job to start because they had sold us this aluminium door without a key. He had said "you can unlock it from the other side, and I'll give you a new lock". It could not however be unlocked from inside. So Tobias had to break into it first.
He did a great job installing it and the girls are thrilled to be able to finally close their bedroom door (and lock int from the inside). :-)
As I was helping Tobias, Ruth was the photographer and her and Arianna were watching Asher.
Asher had a 1 minute semiconscious seizure / episode this evening at 7:15. It's odd that she has had 3 of these this month. The last time she had one was in August last year. It makes me wonder if it has anything to do with the "new" drug we trialled. I'm glad it won't be long and she will be off it.
She wrote such a lovely note in our guest book and had a whole lot of word bubbles that help us remember so many fun things.
Tuesday 24th: Arianna came with Brendon and I to the hospital so that she could get to see a bit of it. Being a nurse it is obviously interesting for her to see how different it is to the hospital's she has worked in. We had an appointment at 9:15 (which we were a bit late for) so we had a quick goodbye when we arrived. Her flight to Auckland was only after lunch, so she had time to see some sites before.
Brendon and I then had a good meeting with the dietitian. This photo shows all the things we got to get us started on this journey. Brendon was especially thankful to learn how specialised she is. She is only doing Ketogenic diets and has travelled all around the world learning. She still has all those contacts too, so we have a wealth of support. I have another meeting with her next week and at this stage Asher is booked in to hospital to start the diet on 13th Feb. She will be in hospital for at least 3 days (but up to 5) as they slowly get her onto the diet and work out what her exact "prescription" is. It's not just a blanket 4:1 ratio, but is worked on exactly on how each child's body responds to the food.
After the appointment we headed to Turners to see what they would give us for Rachel's car, and see what manual cars they had available. We had to have an appointment for an assessment, so we headed off to enjoy lunch together first. A belated birthday lunch for Brendon - which was delicious.
Back to Turners after lunch and we decided we would sell her car privately. We wanted to have a look at what they had while were there.
The family enjoyed some watermelon on the deck. I had to smile as Brendon and I immediately walked to the edge of the deck to start spitting the pips. Such strong childhood memories for both of us with this.
Hezekiah had enjoyed most of the day with his friend who stays up the road. He was so excited about telling me all that they did today. They had such a great time.
Hannah stayed at her friends from last night and I picked her up on my way home. She also had a great time. That left just Rachel and Ruth home with Asher - which makes it just that bit easier for them.
Ruth wanted Dad to pick her up this evening (I'm not sure what the reason was - to test his strength perhaps or to see if she was too big now). So he gave her a nice big kiss. Then we took a "normal" photo. :-)
At 6:30pm Asher had a 2 minute Tonic Clonic. She went very blue. I was thankful it didn't happen during the day while we were out. I fully trust Rachel and Ruth as they are both very competent and knowledgeable with her seizures, but I don't really want them to have to handle the stress of it on their own. So I was really grateful they had a nice quiet day with her.