Garden work and sports begin

Thursday 25th April: Hannah was pleased to be able to join St John Youth for the Anzac parade in Amberley this year. Looking so smart in her uniform.

Anastasia looking very cute with her red shiny shoes and her hair tied up.
Ruth in her Guide Uniform for Anzac today. And then enjoyed helping us with some gardening. She enjoyed using Dad's tools to form a wall around this bed (so we can get the grass growing up nicely to the side).




And then she loved using Dad's pick to dig out this area. 

It was finished up a couple of days later, but I thought I'd pop the photo in so you can see the end result. It looks really good.

Asher enjoying playing with Anakin and his cat tree (right inside the cat tree).

We have learnt about proprioception and seen how much Asher likes deep pressure on her arms. She also likes big hugs (and squeezes) at times. The lady who has been educating me on these things told me about weighted teddies for children. So I took a dog teddy we had, removed all his stuffing, and replaced it with wheat. She loves him. He is really heavy and gives her lovely pressure when she wants it.

Friday 26th: What stunning colours.



Hezekiah asked me to take a photo of his creation.

Saturday 27th: The children helped in the garden today. It's starting to look a lot more controlled - which Brendon and I both really thankful for.
Anastasia wanted Dad's pizza and was happy to just try get a bite off it. She is happy to try any food that someone else is eating.

Monday 29th: I must get a photo of this area before it's totally changed. I managed to get a free lean too / carport that Brendon got help fetching. So we have most of what we need to create a car port for Rachel on the side of the garage. So the first step is Brendon has to dig big holes for the new posts. And I want to remove all the beautiful bulbs from that bed (as the whole area will be stone).

Wednesday 1st May: Children photo.
And Asher enjoying using all 4 iPads in the house.

Saturday 4th May: Hannah's first day at netball.



She has a number of short games through the morning. I was pleased to be able to get to watch most of them.









And Hezekiah's first day at soccer. Thankfully they were both in Culverden.
So Brendon was with Hezekiah for his games but still had enough time to come over and watch Hannah play too.

Thankfully I was able to pop over and watch a bit of the soccer too. Brendon was asked to get on the field and coach them a bit - which he enjoyed. The team is mostly beginners but they had great fun.

Once sports was done and the children were home, Brendon and I managed to get away for a night for our 22nd anniversary. We are so thankful for the help with watching the other children (including Anastasia) so that we could have some time totally on our own.
We had a lovely dinner out (a real treat).

We stayed at the same bed and breakfast we had previously. They are such a beautiful Christian couple that we always enjoy the big of time fellowshipping with them too.

They had plans in the evening though, and so we got to enjoy special time alone in their amazing spa. It was so good to have the time to chat and just relax.

Assembly and Armistice

Friday 9 Nov: A certificate for Hezekiah at assembly today. Well done!
Hezekiah was also so excited about going to Youth Group for the first time this evening. It's from 7 years old - so he although he could have gone 2 weeks ago, we had other plans.
VIDEO
Anastasia having so much fun with Dad and trying to say "more" so sweetly.

Saturday 10th: One advantage of having an older sister with a license -trips to the tea room.






BELOW
Sunday 11th: A different day today with our church and many others joining together to have an Armistice service - 100 years since the end of World War 1.

So many uniformed people joining in the parade.

Rachel at the front of the St John Youth, leading the colour party.





So special to be part of this special event.

VIDEO
Just a short clip to capture the power of the canons that fired 100 times during the morning.

Flag flown at half mast.
And even a fly by.
They came past together.

And then a bit later one by one. It was a very special addition to the morning.

Then we met up with friends at a local part to have a picnic lunch.

Anzac, apples, sing and dance

Monday 24th: As Lynda was away for a week during the term, she offered to do a week in the holidays instead. Asher was too ill last week, but was able to attend this week. She had a lovely time. I think she had cabin fever from being at home for a solid week. And it was a great help to me, especially after the hard week last week.
Asher had her "normal" morning snack for the first time in a week, and unfortunately got sick after lunch. A similar thing happened last week on Wednesday night. We gave her just 2 teaspoons of her "normal" evening snack, and she got sick in the middle of the night. At the time I wondered if it was perhaps the fresh cream in the snack, but we cancelled the baby sitter for Thursday evening, just in case it was still the tummy bug. She has been absolutely fine since then (and not had any fresh cream). So this was clear for me that it was a reaction to the fresh cream. (Almost exaclty the same amount of time after the fresh cream to being sick.) This is a huge blow for her diet as it was a major source of fat in every meal and snack.
She has now lost almost 1kg in the last week and hasn't got her normal appetite back. It's a real juggle to try and tempt her to eat (anything) but then also try and keep the fat to protein & carb ration right. I have given up trying to limit her protein and just focus on the total of protein and carbs. At this stage protein is more palatable for her - so we go with that.

I have been praying much for wisdom to know what to do with her food. She is not enjoying things as she used to. So I need to be creative and find ways to make it work. I praise God each day that goes without seizures though. Thankfully the diet challenges have not been resulting in her ketones dropping (if anything they get too high when she doesn't eat enough). So at this point it looks like the higher ketones are indeed helping with seizure control.
Tuesday 25th: ANZAC day today and Brendon is working again. The service was in Waikari this year, but Lynda graciously gave the girls a lift to the service. Rachel even got to lay the wreath on behalf of the St John attendees.
Last night Ruth and I made some ANZAC biscuits as a part of her guiding badge. I just used my "Crunchie" recipe from over 20 years ago, as it's almost identical. It was the first time I had made the recipe into biscuits though, and that worked really nicely. Normally I would just push the mixture into a pan and then cut it into squares after baking. I think biscuits are the way to go though - and a perfect ANZAC fit (wheat free as I used rice flour rather than wheat flour - and not officially GF because of the oats).

This afternoon Ruth made some apple sauce and had fun using the apple peeler and slicer. Hannah and Hezekiah had some fun with her too. She "peeled and sliced" a carrot for them each too. They loved having the twirly apple and carrot to eat and then Ruth even created some jewellery with the apple skins. :-)

Wednesday 26th: Asher was at preschool again this morning and so the others made the most of using the TV and did some Sing Star. At this point Hezekiah was just dancing behind them. They had so much fun. Thanks for suggesting it Ruth.

This afternoon while Asher was enjoying some time on the bed with me, Ruth had another great suggestion and got my Zumba DVDs out and got them all doing some exercise. So much fun.

Thursday 27th: Asher had the best day by far today, without her ketones spiking. I made sure I fed her regularly (almost 2 hourly) and was sensitive to if she was even slightly "grizzly" and after a bit of food she was happy again. She is still not enjoying her food as before the illness, but it was a good improvement today.
Ruth made herself an omelette this evening and decided to give Hannah and Hezekiah a taste. So they then asked for their own. :-)

Friday 28th: It was wonderful to have Brian and Tanya join us for lunch today. They are having a South Island holiday, so we were thrilled they put us on their agenda as they made their way up the island. We saw them last in 2010 on our North Island trip. Brendon took the afternoon off, so we had a lovely time visiting and catching up.

It was a good opportunity to get a new family photo too. :-)
Unfortunately Asher had a seizure at midday. A 7 minute Tonic Clonic. Thankfully she had already asked for food not long after 11, so didn't go to sleep with an empty stomach. She was rather unsettled after the seizure but thankfully did have a good sleep in her bed while we had lunch.
I wasn't too surprised to see a seizure today. Her ketone levels have been nice and high since her tummy bug, only twice dropping just under 4 in the mornings. She has been eating a lot better since Wednesday though, and this morning her ketone level was only 2.4 - so rather low. A good indication to me that the higher ketone levels do seem to be helping with seizure control.

Rearranging bedrooms

Monday 25th: Anzac Day today but Brendon had a full day of work. I was however just so aware of it being a holiday and decided I wanted a bit of a different day to normal and so I decided to rearrange the sleeping arrangements. Asher is too big for the cot now (even though it was more like a bed with the front side off). So we took that apart. I wanted to bring the top bunk from the R room (a single bed over the double bed) but ended having to totally dismantle it to be able to move it. I also got the bunk beds up on each other again in the H room and moved my sewing cabinet from my room into the H room (so that I had room for Asher's new bed). The children were really good about helping with the furniture and watching Asher.

Rachel and Ruth headed up for the Anzac service (I was pleased it was in Hawarden this year so that they could just walk up). At 11 I decided to walk up with the younger 3. We were unfortunately just too late to get to hear the bagpipes, but we did get to hear the bugle.

And nice to be able to have a bit of time to talk to Hezekiah and Hannah about what is being remembered today.
The girls looked really good in their St John uniforms and were able to march with the St John Ambulance officers during the parade from the hall to the monument.

I had noticed that a neighbour also had one of these beautiful trees with purple autumn leaves. So I took a photo on our way home. I'm so glad I did as a week later almost every leave was off.

A bit more intensive furniture work once we were home so that Asher's new bed was ready for her nap after lunch. I'm so thankful for all the help the children gave. I was so pleased with all that we got done.

This bed is also a great option for Asher. Because it's the top bed of a bunk, it has the railing all the way around (except for where the ladder goes). So Asher has learnt that is the only place to climb in and out, and it makes it nice and safe for her too.

It's another small reminder for me of how different it is with Asher. All the others were sleeping without a railing by this stage. And although I don't think she would fall out of bed, the consequences if she does could be worse than the others. We want to protect that head as much as we can. And then it also gives her more protection for if she had a seizure in bed.

I wasn't sure how Asher would handle this big change. It helped that we had bought her a Dora duvet cover for Christmas. That made it very exciting for her.



Brooke came over for a play in the afternoon and I'm pleased we have moved things around in the H room, as they have floor space again to play.

I had asked Ruth to take a photo of her room before it got dark, and I found these photos were also added. :-)

Even Brooke helped this afternoon as we moved this big cabinet out of the R room and into the container for Ruth. We also moved their desk out - which is in the middle section of the container.

Wednesday 27th: Asher got started with her puzzles early this morning (she still had her bib on from breakfast).
Funny thing about the bib is that she doesn't really need it any more - but she is so in the habit of putting it on. :-)
She tackled 16 in one go today.

Asher likes putting her summer pjs on for her afternoon nap. She often takes them off and puts them on again - often getting the label on the outside and in front. :-) Shadow normally comes into the room when I go to her when she wakes and Asher will often not even look at me but go to Shadow and say "hi dog". It's so sweet.

The preschool stays open through the holidays and because Guides is not on, I was able to fetch Hezekiah a bit later than normal and I took Asher with today. It was good that I did take her as she was rather upset at first about getting out the pram. She had it in her mind that she was going for a walk - not just down the road. She will be starting at the preschool next Monday, so it was good to have her spend a few minutes there today as a bit of an introduction.

Hezekiah asked me to take a photo of him riding this bike. During the holidays children get to bring their two wheel bikes from home, so I was so thankful that he got to enjoy using this one (even though it's a bit small for him).

Ruth doing some riding too.

The church wants to introduce new people and families at church on Sunday and asked for a family photo. So I decided to get a new one.