10 pin, swim, school and cool

Sunday 27th: I needed to get to town to return something (within the 14 days of purchasing it on-line) and so we decided to make a day of it. We managed to get a carer for Asher and Anastasia again, so could enjoy a fun day out with these 4. Ten pin bowling was the venue. I went when I was a guide leader around 8 years ago, but we can't remember when last Brendon has been bowling. The decades of not playing didn't bother him though and he got loads of strikes and spares.
It was lovely to do something totally different and make some wonderful memories with the children.
10 Pin Bowling Quik story. Everyone got at least 1 spare (I just didn't get them all on video). Got some great ones though.

Nice to have a print out of the score card. The younger three had the sides up to help them and even the playing field. Which meant that I ended up coming last on both games. :-)
I post the score cards here as I'm sure Ruth will enjoy looking back to them if / when we get to play again.

Arcade video. With the holiday special we got (with 2 games) we also got free arcade coins. So had some fun with those after the games.

Monday 28th: Asher "reading" to Anastasia this morning. Anastasia had the book and Asher took it from her. So I just put Anastasia next to her so that she cook look while Asher paged through. It was very sweet.

Cuddles with Ruth this morning.

She still enjoys climbing in boxes. We have to keep her from climbing in the ball box (which is smaller than this).
Swim 28 Jan. We headed down to the pool this afternoon at 5pm. Here is a video of some of the fun.

Posing for a photo.
Unfortunately it was too late in the afternoon and Asher ended up having a seizure while in the pool. We can only guess that the light's angle is too much later in the day. All the other successful swims have been closer to midday. It was only about a minute and a half. That's only the 2nd seizure in January though.

Tuesday 29th: Asher wanted to give Anastasia her milk today.
It was very sweet.

Once I got her position right they both carried on playing while she drank. :-)

Wednesday 30th: First day of school 2019. And all in new uniforms too. Looking so good.
Ruth is year 9, Hannah is year 7, Hezekiah is year 3 and Asher is year 2.

After her time on the trampoline she had a swing but then clearly told me she wanted to have a swing on this one too. She saw Asher in it the other day - so that's enough to make her want to do the same. :-)
Swim 30 Jan. Rachel stayed home with Asher and Anastasia (who was sleeping) and so we had a great time at the pool testing out the GoPro a bit more. Here is fun video (including slow motion which was fun).

I've learnt how to take photo snap shots off the videos too. Hezekiah had never jumped off the bench before and was so brave today. At first he started on the lower step and everyone was cheering him on. He wanted Dad to grab him as he landed. He did that just once and then went to the top. He didn't even hesitate too long and went for it - with loads of applause from the kids around. It was really cool to have them all supporting him like that.

And once he had jumped with Dad there for a couple of times, he even had the courage to do it on his own - realizing that he would automatically come up.
He had been doing some "jumping" from Dad's arms before, and then Hannah came over. She is too big, so had to go on his shoulders. She did a great diver that I only just got on video. The video didn't work, but this snap shot of the video was cool. Hezekiah then had a go on Dad's shoulders too and did a great job.
It was lovely to be able to get the time with them at the pool having fun like this.
Thankfully Asher got to swim at school today and it went fine. With them going more to the middle of the day it seems to not be such a trigger for seizures. She has her dark goggles, and I am just thrilled that she has gotten to go. So she didn't miss out completely today.
Talking about little children enjoying boxes, Asher decided she would use this one as a little hut. It was so cute seeing her back up to it.
Thursday 31st: Full school assembly this morning to welcome the new students and teachers. I was so surprised to hear that Ruth had been selected as a deputy house captain. She is the youngest one. Well done Ruth.
Asher had a challenging start to school yesterday. I asked the carer who gets her ready to rather stay with Anastasia while I took her up. That was a good call because I had to forcefully keep her in the new classroom. She wanted to just run when things were all so different, but I knew that if we allowed her to get into the habit of going to the previous class or hiding in the store room - she would want to do that every time she was unsettled. Thankfully with me holding her tight, she was able to get her iPad with familiar games and then eventually notice that there were other familiar games there too.
Today the carer took her to school and although she did need to direct her to the new classroom, once she was inside she found her desk and familiar things. What a relief.
She was also fine both Wed and Thursday at the end of the day. First playing in the sandpit and then today making bubbles. It was good that she was happily busy, and not at the gate rattling it to go home. So on the whole a very good start to the new year for her.

Friday 1st Feb: Uniforms all into the wash when they got home and I love the colours they changed into. What a cool summer photo.
Asher had a more difficult day today. She was not herself in the morning and eventually I had to pick her up just after midday (she fought to even take her medicine which is never normally an issue at school). Thankfully she was ok through the afternoon and as you can see in the photo above - she didn't look sick at all. She didn't' want to eat much today and so something must be up. Hopefully its nothing serious.
This evening I got the step for Anastasia to climb onto. She had so much fun and was so proud of herself.
Ruth had a busy evening packing for her first kiwi-watch trip for the year tomorrow. With her best friend not going (and her mother) Ruth had to organize and carry all her food this time. Thankfully Rachel got two free tramping packs and let Ruth borrow one. It will be good to have the weight off her shoulders.

Big hair cut and walking before 1

Sunday 11th: This afternoon Ruth was enjoying the sun and Asher took the opportunity to have a cuddle.

Hannah had a very big hair cut this afternoon. This photo doesn't show the cut very well, but it does show some of the hair that was cut off. I don't know why we didn't think of cutting it shorter ages ago. Being half way down her back looks great, but is so impractical during summer when they swim almost every day at school. Every day she swims she also needs to have an Epsom salt bath to wash off and neutralize the negative effect that the chlorine has on her - so this is a much needed help.

Monday 12th: Another help to Hannah with the chlorine was to take her for EAV testing again. This will help her body to get as strong as it can be (and clear out any existing toxins) before this summer season of so much chlorine exposure. We may need to consider going again once the swimming is over for the season to really make sure her body doesn't have to keep struggling from it.
A better shot of her new hair cut. I just love her big curls.

Fun on the deck while Dad does the BBQ.
VIDEO
Showing off her walking before her 1st birthday.
VIDEO
Tuesday 13th: She loves music and it's so fun watching her "dance". This was taken 1

Chess, stress, bones and beating times

Tuesday 26th: Ruth spent the day in town today with a few other children from her school at a chess competition. This photo was in the newsletter this week. Well done for trying something different Ruth.
I had Asher's speech therapist visit this morning. She has a talking device and Mary needed some training on it. So I gave her some basic training and we discussed how we can get it used more. We had a good meeting and although I know it is a long term help for Asher, it is exciting to see how much it can help her.
There are days where speech is harder for Asher, and times when we just have no idea what she is asking for. So having this device working well for Asher will be a huge blessing to her. I'm sure she will catch on to it quickly, as I saw how quickly she took to it when we did an intensive trial over a year ago. It just needs regular practice and a logical approach to make it practical and useful.
Ruth often tries to get Asher to hold or cuddle Anastasia. Today was very special as when we tried to take Anastasia off her lap, she pulled her back. So nice to see Asher enjoy a cuddle with her.

Ruth was still in chess mode this evening, so our chess board game out for some use.

Wed 27th: Rachel had a full day of work in town today. She left before 7 for the 9am start and was only back around 5. She is so thankful for the longer shifts that she can get and this was nice to be during the day. It was at the Air force museum and they served over 600 guests.

Ruth and Dad headed to the tea rooms this afternoon.

Anastasia enjoyed chewing on a belly strip bone this evening. I'm so pleased we have avoided the baby food stage and can slowly get her onto real food as she shows interest. This was already a great start, getting a different taste in her mouth and learning what to do with tiny bits of food that she gets.

Thursday 28th: It's been 3 years since the first appointment with Life links - an organization that takes care of full time carers. I have been getting carer support hours through them over the years and they have increased each year. When my case manager called last week and asked if things had changed much over the last 3 years, my answer was a definite yes. I had thought that things would get easier this year with Asher at school, but I was wrong. In many ways, this year has been even harder. I think the biggest thing that I was not prepared for, was the high amount of care that she continues to need. Not just the constant supervision for seizures (which I do now get a break from) but the continued basic care that she needs. She still needs to be dressed in the morning, she needs help eating her breakfast, brushing her hair, putting her glasses on. All the things that a normal 5 year old can do, she can't. And it's draining. I knew that more carer support became available once the child turns 5, and now I finally understand why.

It was a good time of chatting too as my case worker has her own special needs children (who are now grown up). So she has been where we are and she really does understand the struggles. Her son has seizures too, so she understand the stress that this puts on parents. She described it in a very helpful way. She said that while most people have stress levels around 2 or 3, we live with stress levels at a constant 9. So whenever the smallest extra thing happens, it's too much. For other people it can rise quite a bit, even getting up to 8 or 9, and then they can recover and get back to their normal 2 or 3. For us, we don't have much room before we are maxed out. It's helpful to see it like this and a helpful way of explaining to others why things are hard for us. It's also a very real reminder of why we need to put things in place to try and reduce those stress levels. Our one plan (that I shared with her) was to try and get Brendon and I to go away for a night each month. She was very pleased and said I must put a priority on this.
She also said that it was only because of the effort they put into their marriage that has kept them together. She said the odds are against us as many couples do not cope with this stress and divorce is very common. So it was a great time of encouragement and good to also discuss practical strategies for us to put in place.

Brendon, Ruth and Hezekiah headed out for a run a bit later today, so with it being so cold Rachel decided to rather stay home and have a ride on the stationary bike.  Ruth did really well and got 6:12 (I know it was at least 6:30 last time).
Hezekiah did amazingly well though. I could see him not far behind them and called out encouragement and so he kept pushing. He was just under 8 minutes last time, so we were really impressed with his 6 min 48. Over a minute off his time.
He was bushed though, and his ears were so red (probably because of how cold it was out there). Good job to all of you.

Anastasia had eyes for Dad's food this evening, so we gave her a chicken bone to chew on and that kept her happy.
Friday 29th: Asher had 2 seizures at school this morning. The first one around 9:30. She got back to the classroom just after 11 and within just 10 minutes or so had another one. She was looking so good when she came back to class that it was quite a shock to have another so soon. She fell with that one and bumped her face, thankfully just missing her eye. The school called and I agreed that I should rather bring her home. Then I could make the call on if she needed extra medication ect. By the time she woke from her nap at home after the 2nd one she had a fever of 38.8 so I gave paracetamol. She ended up getting an extra dose of medication through the afternoon as well as a dose of Midazolam at 6pm as she was looking really bad.

Brendon took her to the doctors in the afternoon to just make sure we were not missing something obvious as to the cause of the fever. Her urine and ears were fine and she wouldn't let them look at her throat. Thankfully the fever was gone by Saturday morning and I think the dose of Midaz helped just break the cluster and she didn't have any more seizures through the weekend either. So we don't know what the cause was but are really thankful it was over so quickly. That brought her total seizures in the month to 7, till a good month.
Rachel's new laptop arrived today. It's nice that she can enjoy the fruit of her labour and buy things with her well earned money. She was very excited about getting it set up today and it's been a help in motivating her to get her school work done too. She is on track to having her NCEA Level 3 done this year, and perhaps even within the 3rd term.

Hannah got a certificate at the singing assembly this afternoon for "being a reliable member of Kikorangi who competes her work independently but knows when to ask for help". Asking for help was one of her goals at the last goal setting conference, so this was a great achievement. She was often too afraid to ask questions as she didn't want to be laughed at. So the fact that she is better able to ask for help when she needs it, is a great improvement. Well done Hannah.

Saturday 30th: There were 2 parties on this afternoon. We dropped Hezekiah at his and then headed to the one that Asher had been invited to. We were not sure if she would even be happy to get out the car, so it was in our minds a very successful afternoon. We did have her bag of toys which was a big help, and at one point we grabbed a little bottle of bubbles to help calm her when she had gotten a bit stressed.
Both the parents work on the same farm as Brendon (although in different sections) so it was nice for us to get a bit of time to chat to them. I'm pleased Brendon had suggested we go. I had thought it was not even worth it. So I'm glad he got me to give it a go. It was nice to catch up with the other mothers who were there too.
Sunday 1st July: Wow - and just like that we are in July. We got the monthly children photo before heading to church as Rachel headed into town after the service. She is doing the CEF Camp again these holidays and they had their visitations today - where they go and visit the families and answer any questions about camp. So she was only back after Asher was in bed.

7 months and late nights

Wed 13th: Hezekiah had a little accident at school today. It was good to get all the info from the school before we picked him up. A nasty cut, but thankfully not deep and so hardly any bleeding.
Thursday 14th: Off to the tea rooms for a treat this afternoon (and to collect eggs). Never too cold for ice cream. :-)
Friday 15th: Rachel headed into town on Thursday afternoon for a work shift at the air force museum. They had said they needed extra staff and as she had her hair dressing course in town in the morning, it was a good double use of travel as she could stay with a friend in town overnight. This was a nice change too as it was serving canapés at a special function. Nice to do something a bit more fancy than just cashier work as she does at the rugby games.

She got time to practice some "hair ups" today. The bride for February has an idea of how she wants the bride's maids hair to be - and this is what Rachel was working on. She also got to do some colouring - learning how to colour regrowth (thus only colour at the base of the hair).
Then she worked at a rugby game this evening. She stayed over in town again and then did her Café work in Amberley on the way home. So really the one return trip to town had 4 activities included. A good use of the petrol this time. Rachel is saving up to buy herself a laptop - so she is thankful for the extra shifts she has been able to pick up, especially these last few weeks when she is already in town for the hair dressing course. It was her last day today, so now she will have to try and get some longer shifts so that it can make it worth the travel expense.
BELOW: A day late with the monthly photos, but at least we have the 7 month photos. Even though not putting on much weight, she is still very similar to what Hannah was, although a little bit taller.

Cutie.
Saturday 16th: Ruth back from her netball and getting Asher to do some netball practice while Dad does the BBQ. We were all amazed as Asher even got one in. :-)
Rachel was only home for a couple of hours this afternoon and then Ruth and her headed out at 5 to an event that I had signed them up to with the Hurunui Youth. This was what the write up said:
I AM UNBREAKABLE is about positive messages being communicated through multi-media, real time social media engagement, talk show text in panel, and an all-star line-up which includes world hip hop champion dance company - Identity Dance Company and top New Zealand artists Nathan Phillips, Marley Sola, Jason Aileone and Grace Ikenasio.
We are bring you to this event FREE and throwing in Pizza, Mr Whippy and the Margaret Mahy Park!!!


The Identity Dance Company made a huge impression on both girls. Rachel was especially reminded how powerful dance can be. She really enjoyed how they had used dance to communicate such a good and clear message. They ended later than expected and had a lot of fog on the trip back, so the bus was even later than expected. Thankfully another mother had offered to drop them off at home so that I didn't need to stay up for them. I heard them arrive at midnight, and so could sleep soundly after that. I'm glad they could enjoy the event together.
RIGHT: Anastasia is really enjoying playing with Hezekiah's Woody.
Sunday 17th: Today Ruth managed to complete this fun puzzle game I got in Greymouth.
Tuesday 19th: Ruth and Hannah attended the CASA Kapa Haka in Rangiora today with a bus load of children from Hurunui College. They were especially excited about looking out for a friend from church who works at the school in Rangiora.
Hannah was especially excited about telling me about their lunch when they got back. Hezekiah had started off in the group with practices, but pulled out a month ago. He is keen to put more effort in to practices next year to join the girls.

Local residents and ratepayers were invited to Hanmer Pools for free entry and nibbles this evening. I suggested Brendon take the 3 children up. Rachel had St John, so she couldn't join them. I'm glad they could have a special fun outing together.

Wednesday 20th: Hannah enjoying an outing with Dad today.

Thursday 21st: The first practice run with all 4 of them.
Brendon ran out front with Ruth and they did the block in 6 min 30. Hezekiah did really well and came in under 8 minutes. It was really cold out, so Rachel struggled with her chest right from the start. We also realized she needs to get some decent running shoes if she wants to get fit with them.


Brendon and Ruth encouraging Rachel through her last stretch. I think it's a bit of a shock for her as to how much fitness she has lost from not doing ballet this year. She has been doing ballet for 10 years, so it's quite a change.
It's not the nicest time of year to start, but I'm sure she will quickly get her fitness back if they can keep up the habit and get out regularly.
Anastasia is getting nice and strong. Look how high she has lifted herself up. It won't be too long before she is crawling around the place.
Friday 22nd: Our first really frosty morning this winter. The frost on the glass at the back door is always so beautiful.
Brendon and I were out this afternoon and just before we got back around 6pm, Asher had a seizure. Thankfully it was only 45 seconds and Brendon could help carry her to bed for a sleep. Her last seizure was on Monday the 11th when we were away. The school didn't call me as there was nothing we could do. Thankfully it was only 1 min 20 seconds and I was glad it wasn't that night while Rachel was watching her. It was nice that she had a good break again. That's only the 4th one so far this month.
Saturday 23rd: Rachel had a very long day today. She left just after 9am for her café work in Amberley and then headed into town for a big ball that v-base where hosting at the Horncastle Arena. There were over 800 guests to a 3 course meal. She started at 4pm and only finished at 2am. Again we are so thankful for families in town who have her over to stay after these late shifts.
In an attempt to see if we can get more control over Brendon's migraines, we have stopped our traditional "fish and chips" on Sunday after church. So our new tradition is a BBQ on Saturday where we cook up enough meat and potatoes for both days. Then it's all ready to eat when we get home from church. Hannah was pleased when I asked her to cut up the potatoes for the salad this afternoon.
She is not mad about the onion that we put in, but enjoys it so much that she has managed to get used to the onion.
We all had a good laugh a couple of weeks back when I made potato salad for the first time. Ruth tasted it and said "wow - it tastes like real potato salad". She has only ever tasted it when a bit has been bought, ready made, for some trip. I don't think I have ever made it. It's hard when Brendon's mom made it so well and I just didn't really know how to duplicate it. Well, I've finally figured it out.
Rachel was a key in helping me the first time as I asked her to put the potatoes on to boil. She cut them in really big pieces. I was surprised, but then realized it was the perfect way to cook them. Cutting them into the smaller pieces once cooked.  Finally the puzzle in my mind was solved. And we have a great mayonnaise that we buy (a bit more expensive with real egg - but really tasty) and so I am finally happy with being able to duplicate Nana's potato salad. It has become a family favourite except for Hezekiah who doesn't eat mayonnaise at all. Thankfully he is more than happy with the boiled potatoes - just like that.
Sunday 24th: Brendon preaches on the last Sunday of every month and it's always a bit harder for me as Asher doesn't always listen to the older girls. So today I asked her one teacher aide if she could spend the morning with her. So she had a fun morning and I had a stress free one, able to listen to his sermon (last month I ended up in the car with the two little ones).
Monday 25th: Seizure number 5 for this month this morning. Thankfully only 1 and a half minutes, so that was good.
After bible study this evening the children were excited about getting Anastasia into the Jolly Jumper. The study had finished a bit earlier than normal, but Asher must have heard when the prayer started at the end and just decided it was time to leave. So there was still a bit of time before the others had to get to bed, so they got to enjoy watching Anastasia in the Jolly Jumper for the first time. She does love kicking her legs, so I think one she gets the hang of it she is going to have a ball.