Keto call and pancake practice

Hannah's landform creation that she made with Grace.

Monday 24th: During the night I started feeling very nauseous. This was what Brendon had last Saturday night, ending with him spending the whole day in bed on Sunday. Thankfully it really was just a 24 hour tummy bug. After a week I thought we had avoided it spreading, but it was not to be.
Brendon had headed off to work and although Rachel tried her best, Asher just refused to eat. So I got up to feed her. As I was up I took the kids to school, but by the time I got back home I felt even worse. Thankfully I only vomited once, but I had to ask Brendon to come home so that I could just rest (and Asher could get fed).

Ruth's landform creation that she made with Jess.

Although I felt a little better on Tuesday, Asher and I didn't go to Champion Centre. It was better to just have a quiet day at home. That did however mean that I also couldn't attend my appointment with my midwife that I had planned for on our way home. It worked out really well though, as she was up in our area on Wednesday with a post-natal visit. So she came to see me on Wednesday morning.
We have found a new EIE for Asher, but are waiting for Police Clearance to be done before she can start at the preschool with her. On Wednesday morning however, she came to our home to play with Asher and get to know her. So that allowed me to have time to chat to my midwife which was really great.

On Wednesday afternoon it was Hannah's Student led conference. We were both too emotional though, so we didn't get much done. On Thursday afternoon it was Ruth's turn. I was feeling much better by then and Ruth knew exactly how it all worked, so that went really well. Ruth is doing very well at school. It was nice to sit with her report and look at what she has already accomplished this year, and then what her next goals are. She has already reached the National Standard in Math with half a year to go. It was great chatting to Ruth about how things are done. They can go ahead with work and are not kept to only doing what is official their years work. They are split into groups according to their abilities and progress from there. Ruth still has one group that she could move up to in Math, so I know she will get all the stimulation she needs to keep going.
There is one boy in their class (year 7) who is so gifted with Math that he is already working with the year 11 children. So it was a great afternoon for Ruth and I and I learnt a lot about how she is doing.
Unfortunately I had turned the volume off on my phone but left it in my jacket (which I had taken off) and so I didn't feel it vibrate when Rachel phone. Asher had a seizure while I was out. It was one of those horrible times when she has pain afterwards and it was very emotional for Rachel. She said it was so hard not being able to help her feel better. And then she had Hannah and Hezekiah pestering her for things at the same time. As well as her not feeling great (she got the tummy bug last night - so today was a recovery day for her and she missed dancing). So she had a really stressful experience. I felt so sorry for her having to go through that. It must have been a very real learning experience for her though, to get a glimpse of the complexity of the stress that I am often under.

Friday 28th: Hannah and Hezekiah played so nicely together this afternoon. I always enjoy listening to the different games they create. Hannah was also excited about going to Youth tonight. Hezekiah can't wait till he is old enough to join them too.
On Wednesday evening I asked Brendon to call Asher's dietician. I was feeling too emotional about it all (so knew I wouldn't cope with a phone call) - but was also facing the facts that we may need to stop with the diet. When Brendon described what was happening with Asher's meals (needing either of us to feed her - every time), she was the one that said we need to stop. So it was reassuring to me to know that I wasn't over-reacting. It really is not practical to continue.

It was a terribly hard decision to make though. The diet has definitely been helping to reduce the number of seizures, and so the thought of taking her off, and facing more seizures, was really daunting. And really scary.
I took this photo on Saturday morning. An old Keto recipe with most of the fat left off. It was so good to have her asking for food and happily sitting at the table and feeding herself. The change has made me realize how very hard it's been over the last couple of months. If I think back to before the tummy bug in April, the diet was going so well. She loved all the food and happily ate everything (especially loving her frankfurters, olives and butter). Things just didn't come right after the tummy bug and then throat infection a couple of weeks after that. So we have to just be realistic with what has happened. We can't change it - and we have done the best we can.

Saturday morning was spent getting a general clean done around the house. Asher wanted to help with the fireplace too (knowing exactly what to do from watching me before). She did a good job too.

In the afternoon the older girls came with me to the church's ladies afternoon tea.

We had a laugh this evening when Hezekiah lay down next to Anakin. Anakin immediately decided that Hezekiah needed a bath. He held his head in his paws and licked away. It sounds like this often happens when Hezekiah goes to bed at night. Such a special relationship between these two.

Sunday 30th: After a change of plans Daniel came and joined us for the day today. Asher had a seizure at 5pm (1 min TC again). Once she was sleeping I asked Rachel if she wanted to make pancakes for dinner. We haven't made them in quite a while and Rachel was very pleased with the suggestion.
I got the cooking started and then they asked me to flip the pancakes. Which I then did. This was enough to get Daniel wanting to give it a try. So after giving some tips, I could leave the cooking up to him.

I was pleased to get a photo of one of the flips. He did a really good job. I can see this will be a regular meal with any future visits. :-) Although instead of making double my Dad's recipe, I think it will be at least tripled. They were a hit.

Beauty, ballet and a birthday

Tuesday 6th: At 6am Asher had a 1 minute Tonic Clonic. Always an unpleasant way to start the day. Thankfully she could still it off and still be up by 7 (her normal time).
It was a teacher only day at school today. When Ruth saw that it was going to be on a Tuesday, she asked that she could come with to the Champion Center. So she took some photos during group session at the start of the day. She is doing so very well.
Wednesday 7th: We often enjoy the beautiful colours in the morning. I took this photo this morning as it was just stunning.


Hezekiah had his first day in the Year 2 class today. I took a photo outside the Year 1 class when he started, so I thought this would be a nice photo to take of the change.

His year 1 teacher made a lovely book for him of some of his work over the last 6 months. Some very special photos on the front too.



He came home full of paper mache. He was not very happy that a boy had been flicking his hands off - onto Hezekiah - the whole time. Thankfully he got used to it and it washed out ok. I just ended up having to wash his top each day this week. Thankfully he does have two. He has adjusted really quickly to the new class and I know he will be very happy and do well.
Thursday 8th: Asher woke me again with a 1 minute Tonic Clonic at 6am. She then had another 1 minute Tonic Clonic at 3pm. It wasn't nice to have 3 seizures this week. I had gotten really spoilt with her nice 10 day breaks that she had over the last months.
There was a mufti day at school today, the funds raised for the Wetspac chopper. The theme was Wacky or Movie character. So Hezekiah went as Neo again. This time he even had some black glasses. He also said he needed a black shirt and not his white one. Not many children now about the Matrix though, so most just thought he was on of the "Men in Black". He posed for me and had a nice serious face. Quite a hard job for him.
Ruth went with Wacky and just threw a whole lot of things together. I manged to find the tool we were given that helps you put beads on. So we quickly got a load of pink beads in her hair too.
Friday 9th: I called Asher's dietician this morning as Asher has not been enjoying her food lately and I have been a bit unsure of what to do. I have also been feeling very pressured with a load of things happening and so the dietician suggested changing to a Modified Ketogenic diet, to try take some of the pressure off. So we got started on that today. The main change is that she will not really be limited on her protein intake, although her carb intake will drop (because the protein is up). Eventually we will only need to weigh the carb items and be able to make sure she is getting enough fat in with each meal by knowing teaspoons or tablespoons (not having to weight to 0.1g for everything). I was so pleased that this change could be made immediately as it has already taken a lot of pressure off. I was due to make quiches again for her today, and I am honestly relieved that I don't need to. It involved measuring each item for each mini quiche (24 quiches x 5 items) and if Asher was still loving them as much as when I first made them, then I wouldn't mind. It's hard however to put all that effort in and then still have to try and convince her to eat it.
Saturday 10th: Rachel, Hannah and I left early this morning to get Rachel to the Isaac Theater Royal for a ballet lesson with one of the professional ballerinas. What a treat. She had a great time. No photos from inside though, as she was just too busy. No parents or even teachers were allowed in - only ballerinas. So Hannah and I kept ourselves busy while she was having the lesson.

Then we got some lunch and headed out to the Sampson's house for Susanna's 13th birthday party. We were so very thankful to be included in this special day. And what a special way of celebrating the special 13th birthday. Only ladies invited to share encouragement and advice. Her older 5 brothers were the "Men in Black" who served and also shared encouragement.






Sunday 11th: I suggested we make sure we get a photo of how long Ruth's hair is at the moment. We have now re-done almost 100 of the braids (there are 260). They are quite a bit shorter once they have been un-done and re-braided. So her hair will be a lot shorter by the end of the year - as our plan is to have it done by then (Lord willing). At this stage we have started working specifically on the bottom (so there is already a section that looks a bit shorter) and then the sides (to help it look neater).

Cross country and the rest of the week

Wed 24th: The children have all been practicing for cross country over the last couple of weeks. Ruth was especially looking forward to it and so was disappointed that she had missed out on extra training last week with being sick.
The school has managed to keep the event both fun (for those who aren't runners) and competitive (for those who are and who want to get good times). Our children are in the blue house - so they chose some blue things to wear and stand out. Some of the older kids really put a lot of effort to dress in their house colours. :-)
Hannah seems to be really good at short races. She is not too pleased with having to run this long one (over 4km). Here she is chatting away to her friend Grace. The social side of the event was much more important to Hannah. :-)

Ruth looking great in her blue tutu. :-) I'm glad she has the courage to do things like this. She was also very motivated to do well today.



And they are off.

The 5 to 7 year olds do a shorter route.
Beth and Hezekiah waiting patiently for their race to start.
Hezekiah did so very well. I thought I had spotted his spider man shirt coming in the field close to the front. He came in 6th. And as he is only 5 1/2 and it's for up to 7 year olds, I was very proud of him.
I was even more proud when he told me that he didn't stop. He ran the whole way. Every time they had practiced he tried to walk for less of the course. I had encouraged him to do a "Scout's pace" if he got tired. So if he wanted to walk, to only walk for the count of 10 and then try to run for at least the count of 10 again.

So he was very pleased to tell me that he didn't walk at all. He said he was very close to walking at one point, but just decided to keep going.
Well done Hezekiah.

And then I spotted Ruth coming in. The headmaster was just ahead of her and she did try to catch him. It was just a bit too much of a push though. She managed to run most of this last section though and did amazingly well.
Last year she came in at number 121 and so her goal was to beat that. I did point out to her that some of the older children had now left the school, so perhaps getting closer to 100 would be really good goal. Well, she surprised us all and came in at just 75! A brilliant effort Ruth. Well done.
And no surprise - Hannah was still chatting away to Grace when they came in. She did well though and came in at 133. There were a number of older children coming in after them, so it was a good effort from them.

Friday 26th: Primary assembly today and Hannah's class showed their Kea masks and wings. They learnt a lot about Kea on their school camp.
Ruth's class each read a bit about their favourite part of camp.

Well done to Hannah for getting a certificate for "outstanding effort and attitude in spelling, reading and maths." She has been doing really well this year. Good job Hannah!

On Friday afternoons (if the weather is good) I am blessed to have a lady come and spend an hour helping in our garden. It's the one area that has really taken strain over the last couple of years with Asher's extra care needs. Brendon often spends the time he would have in the garden, inside helping with Asher so that I can get other things done. So this is a huge blessing to us both. She did some weeding last week and this week came with a whole selection of plants to put in. She transformed this messy area into a lovely little bed.

She wanted to plant in this area too. When she got looking she found that a bulb that was there had reproduced itself till there were more than a dozen in the one area. So she thinned them out, planted a whole lot of them (nicely spaced) and even had a few to take home.
Just as the lady arrived today Asher had a 1 1/2 min Tonic Clonic. I'm always so grateful when they stop under 2 minutes.

Saturday 27th: I have spent much time this week making quiches. There are 5 different options depending on what people are able to eat, and what they like, as well as medical requirements.
Asher has not been wanting to eat her frankfurters and olives as much since her sore throat, so I thought this would be a great way to get them in. I added broccoli to hers too (which she loves) and she is so pleased with them. Which makes me so happy.
I have made at least a dozen of each (2 dozen of Asher's as they are a snack size - so she will eat 2 - 3 a day). They freeze really well and I just need to remember to take some out the freezer the night before. Thankfully they do all look different - so everyone knows what their own one looks like. There is no way Brendon will mistakenly take the ones with broccoli or olives in. :-)
Sunday 28th: Ruth having some fun with the dominoes this afternoon. :-)

Sprinkler, stunts, triathlon and tummy

Saturday 4th March: Brooke came over for a visit again this morning and her and Ruth enjoyed some guitar practice together.

Hezekiah showing us the tricks he is already learning on his bike.

Vanille popped in for a visit today on her way up to the North Island. She has been working in the Mount Cook area for the last 3 months. It was great to catch up with her again. And to keep with tradition, she asked Hannah if she wanted to have a fame of Uno. :-)

And then they enjoyed cooling off under the sprinkler.


Sunday 5th: Asher had a 1 minute Tonic Clonic during church this morning (at 11:15). She went very blue, so we were glad it was again a really short one.

Hunter came over for a visit this afternoon. the sprinkler was a big hit again.

These two had so much fun. They had the sandpit open and buckets of water over making mud. Then they rinsed the mud off and enjoyed dunking their heads into the water.

He even got his eyes under. Well done Hezekiah.

Brendon and Hannah managed to get some time at the park too this afternoon. The months have been so busy it's been a while since she has had some parent-child time. So it was good to finally get out together.

And then I took Ruth to measure out the 5km race she will be in on Tuesday. She is doing the bike ride for her triathlon team. I was so very glad we did this. On the way out, the 2.5km took her almost 15 minutes. I kept watching her having to stand and ride and kept thinking the bike was just not good enough. She only has use of the back cog as the front gear lever broke. We chatted about it before the return trip though, and I kept checking where her gears were and telling her to change more. She then managed to get them changing and it made such a difference.

On the way back, even though it was more up hill, she only took 5 minutes. Well done Ruth.
And then this evening it was time for a Girl Guiding challenge again. She was the leader who could not use her hands, and we were her team, who could not see. So with us all "blind" she had to direct us to build a "shelter" out of some cloth, toothpicks and mini marshmallows.

Ruth has also been busy with her oil pastels again this weekend. She got these pictures done.

Tuesday 6th: Champion Center today, and thankfully a full session without any seizures. She had a fun time at music today and I just missed getting a nice photo of her climbing through that lovely big harp type instrument - and peeping through the hole at me. It will be my goal to try and get one another time. It was so cute.
Below: She had a great time playing with a ball and the frogs while I got to chat to her OT (and the team leader) about some of the questions I have about "school".
And then group music went so very well. I was amazed at how well she sat through the two very new songs. Hilary (the computer teacher) was there to take a video of them, so I could play that at home for Asher. It looks however, like we may not need it. She sat and looked around and listened. Not at all intimidated as she normally is. I really do wonder if sleeping through the songs last week really helped her to get to know them - even if that was subconsciously.
Then we did our monthly special library stop. And then it was to the hospital for a check-up with her neurologist. So a very busy day in town for us. It all went well though - especially the doctor's visit. I had her church bag of toys with and she just happily sat in the middle of the room and played as we talked.

It was a very wet day and I always feel bad about the children having to ride to school in the rain. Thankfully it wasn't raining too much when they left. It also helps that Hezekiah can ride now too, so Rachel doesn't have to walk up with him.

Rachel did walk up later today though, so that she could take some photos of Ruth in the triathlon. She did the cycling leg which was after the running. Their runner is her best friend Jess, who is really athletic and did really well. So it was a nice head start for Ruth. She felt the ride didn't go as well today as it did on Sunday. If I look at the times on the photos, she did it in about 15 minutes. So much better on the whole than Sunday, but I think she was hoping for 10.

It wasn't the nicest weather though, and with the old bike that she has, I think she did amazingly well. It was so nice that they could get a team together and enjoy it together. Lovely memories made.



Wednesday 8th: A new meal for Asher today. I have started including kiwi crush into her diet as she never really likes having a huge bowl of berries for desert. The kiwis have a much higher carb value - so she doesn't have to eat as much - which she likes.
The cucumber has shown to be too much for her too. She would happily eat more of the fatty things, and just not bother with the carbs. We have to keep things exact though, so I'm working on making it all as palatable for her as possible (which for her means making the carb content as compact as possible). So this has worked well. And it's also great for her tummy. Many children on this diet are on laxatives on a DAILY basis. Asher has only had to have twice. And the 2nd time only half a dose. So I'm very thankful for this too.