Sunday, June 18, 2017

A teddy, a slice, a formal and some boxes

Monday 12th: The one thing I knew Asher would love about this new, more flexible diet, was getting chicken wings. Interestingly she is mostly interested in the skin (which is great with the fat that she needs). She is happy to leave meat on the bones, but wont leave any skin.

Tuesday 13th: Starting to try and teach her to recognise the numbers. She counts well, so this is the next step. She always loves her computer time.
It was nice to get a photo of her at the keyboard too. It's great to see her enjoying it more and more.
After Champion Centre we headed to the hospital for an appointment with her neurologist. We chatted about the EEG and blood results from a couple weeks back and also needed to just check her urine (her acidity levels where not right, and so she will need a supplement to get that corrected).
He is not convinced that the diet is working. The dietician and I feel differently. We both see that she had gone back to the average number of seizures she was having while on 2 AEDs. She is just on 1 now. I think he sees success as "no seizures". He is happy to give this "new" diet another 3 months and then re-assess again. So hopefully we see even more improvement over the next few months.
Wednesday 14th: Hezekiah came home with "Ed the Ted" today. He had to write up in a book what he did with Ted. So first Ted watched him doing some school work.
It was nice that he came on a Wednesday, as he could then join Hezekiah at karate in the evening too.
Asher had a lot of fun with Hannah this evening. Loads of laughing and fun.

Friday 16th: I have been craving sweet things, so finally got to create something sweet that is sugar free (just a bit of stevia used). A strawberry and almond slice. It's a bit too strong on the coconut side, but a big dollop of cream helps with that. I love that this is a really healthy option and can help with weight! Yip - even with all that cream. As there are no carbs (or at least only tiny measurements of carbs), it's a great THM S (Satisfying) snack.
Hezekiah got this certificate at their singing assembly today. Well done Hezekiah. I wonder if you will have your Mum's love for math. I'm so pleased to see you are already doing well with your "speedy addition". Good job.
This evening Ruth headed off to the HYC Formal in Hanmer Springs. I am always so impressed with Ruth's willingness to go into situations where she is "on her own". She booked without any other friends attending and didn't even know if there were any children from her school going. She still saw it as a great opportunity though. She found out this morning that there were some older children from her school going, so at least she had some familiar faces on the bus. I'm always so amazed by her courage to face new and different experiences.
Saturday 17th: At 12pm Asher had a 1 1/5 minute Tonic Clonic. It was wonderful that she had a 9 day break. She has started with a runny nose this afternoon, so it looks like that may be playing a part too.
I had a rather hard day today, feeling very overwhelmed by all that needs to get sorted for getting our earthquake repairs done (as well as everything else that is going on). Brendon had said earlier in the week that he would take over organizing the repairs. I needed to give it totally to him today. I got a book out and just wrote down all the things that I had in my mind that needed to be done or sorted out. It was so good to just get it all written down and handed over.
Sunday 18th: Unfortunately we had a few people feeling ill this morning, so we decided to rather stay home and keep all the germs to ourselves. It was good to just get everyone to have a restful day. Although we did rest, we also managed to start some of the packing for the upcoming repairs. We plan to only get it done in September, but there are loads of books that can be stored for a couple of months. So the plan is to just do a bit of work every weekend and slowly get through it all in preparation for September. Although we don't have to move to a rental for the repairs, it will be easier to have us out of the house. The plan is that we go to furnished accommodation for the week to 10 days, and store the furniture in the garage and container while we are away. This way it's much easier for all the work to get done, but we don't have to have two moves in a couple of weeks.

Sunday, June 11, 2017

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).

Monday, June 5, 2017

Long weekend visit

Saturday 3rd June: Hezekiah spotted a container with our nice set of carpet bowls. In the same container was a big selection of marbles. Asher had so much fun with these today.
Hezekiah spent some time playing with her two. Lovely to get different ideas of what to do with them.
I had to smile when Asher got this book off the shelf and sat down paging through it. I wonder if she will be a book worm like Rachel one day.

Brendon was working this morning and unfortunately didn't make it home by 11:30 as he had hoped, so I had to cook the meat on the BBQ. In almost 10 years of being in NZ this was the first time I have ever used the BBQ. So I'm glad it went ok. Loads more stress than I would have liked this morning, but at least everyone got fed.
Daniel arrived just before lunch for a visit. With Monday being a public holiday he can stay till tomorrow afternoon and still have Monday at home with his family before work starts again on Tuesday.
After lunch the girls got their guitars out, so I gave him mine and they had a bit of fun together.
Then they all (except Asher) headed up to the park. Hezekiah had been looking forward to this the whole morning, so I'm glad the weather was good enough for it (even though a bit cold - at least it was dry).
In the evening Asher enjoyed having the marbles in this bigger container. She enjoyed making a lot of noise with them. :-)
Getting some dishes done together.
Sunday 4th: Yesterday Rachel and Daniel filled the wood box and while they were busy he noticed that some of the boards were loose. So he fixed that up yesterday. Today he fixed our bookshelf. Asher had nocked her back off it, so it was good to get it put back and attached securely.
Thanks Daniel for bringing your "toys" with to help us with these jobs.
There were a lot of games played over the weekend, and they didn't stop when Daniel left. Another game of Cluedo junior (who ate the cake) was played this evening. It was bought for Hannah for Christmas but played for the first time on Saturday.
Monday 10th: With a public holiday today I was pleased to see that the game playing continued. Here they are playing Children's Charades. I think they had forgotten about our cupboard of games. Lovely that they are getting games out that haven't even been played with before.
Rachel is in the background back to her school work. She could only start with the correspondence school (for free that is) in April when she turned 16. So although she missed out on 2 months, she still wants to get her NCEA level 2 done by the end of the year.

Friday, June 2, 2017

Pink or Blue?

Monday 29th: Hezekiah is most often up quite a while before the rest of us. So he puts a movie on to watch while he waits for all the females to wake up. When Brendon leaves for work he leaves a light on in the lounge so that Hezekiah knows it's morning and he is allowed to get up.
Anakin gets up with him and often enjoys this time to cuddle.
At 4pm Asher had a 1 1/2 min Tonic Clonic. That brings the total for May to just 7!!! This is excellent. She averaged 8 a month when she was on 2 AEDs and she is only on 1 now. When she stopped the AED they went up to 18 a month. So we are really pleased with this improvement. We are praying that the diet will continue to make even more improvements.
Tuesday 30th: Asher has also made wonderful improvement at Champion Centre this year. Here she is during "roll" ticking off her name. At the start of the year this whole "group time" at the start of the day saw Asher screaming and hitting me. So it is wonderful to see how far we have come.
Her OT has also been really impressed with her improvement in allowing change. In the past she would "feed" the crocodile the frogs that she loves playing with. Today the frogs had disappeared and there were fish instead. She had to "catch" the fish first, and then feed them to croc. It is so sweet hearing her say "yum yum yum" every time she gives croc some food.
She had a great time during her music session too. I didn't get a photo of her at the keyboard but I was amazed as she normally only lasts for 20 to 30 seconds. Today she spent a few minutes there, playing away and enjoying it so much.
After Champion Centre we headed to the hospital for a follow up EEG. Asher started playing with one of her boxes of puzzles while we waited. She was half way when we were called in and moving the box into the room was a great help. She didn't even look around at the room and just carried on with her puzzles. It got harder from here though. They have to put a tight cap on which is attached tightly to a strap around her chest (so it all stays in place). They then have to get each contact connected to the scalp and they do this by scratching the scalp a bit (with some lubricant). Asher tolerated with it for a while, but eventually didn't even want to finish the last puzzle. They got all the connections done but by that time she was totally stressed. So they discounted the cap and we were able to get out the room to walk around. Unfortunately she was beyond a walk getting her back. She was just screaming and hitting and so totally stressed out.
Through the visit we had a Autism representative present, Helen. I thought she was there to meet me, but it was actually to be a support for me. She was so encouraging and often said things like "you don't even need me - you have this all under control".
During this time of not being ale to get Asher to calm down, she told me that there was no rush, that we had plenty of time, and that I was doing a great job. The encouragement was much appreciated. I then thought of using the lift to calm Asher, as she does always love the lift rides. And it worked. The crying finally stopped.
As soon as we got out the lift though, she started getting stressed again, so I asked Helen to fetch her mini iPad from the room. We had tried before to entice her, but she wanted nothing to do with anything she was so past it all. In the lift though, with her calm, I was able to entice her with an Old MacDonald song app. She loves touching the different animals and getting their reactions. So we were able to leave the lift without crying. With the promise of "room then lift" we got back into the room for the test.
She played with the mini for a while but as soon as her interest decreased, Helen started blowing bubbles for her. A bit hit with Asher. And that saw us through the rest of the test. I asked them to do the photosensitivity part of the test again as she was photosensitive at the last one. I think it may even be worse now though because she had two clear jerks while the lights were flashing.
So although a really hard thing to go through, we managed in the end. I'm especially thankful that they had booked her for a much longer session (it was more than twice as long as the previous ones with the stress factor).
Rachel's ballet teacher had asked if we wanted to attend a show at their hall this evening. We bought tickets last week and I was so glad we had this special ending to a rather stressful day. The music was so enjoyable and it was exactly what I needed. Just to relax and enjoy the beauty of music and people's creativity and talent.
As a bonus, the one musician was an older Scottish man. Even though he has been in NZ for most of his life, he still has a very Scottish accent. So not only did he look like my Dad (with is grey hair and beard) but he sounded like my Mom's parents (my mother only moved to South Africa from Scottland when she was 7). So it was extra special for me to be thinking of them both.
Wed 31st: Dental nurse for the 3 school children this morning. I took a few extra photos of Hezekiah today so that we can make a social story for Asher (for next year).
I am so thankful for how well it went today. I was not asked once about doing any fluoride treatments and x-rays where only a quick passing discussion. I had refused them last year, so thought I would be pushed to do them this year. There was no real indication of their necessity though. What a relief.
It was so good to just be respected for my opinion. She told Hezekiah "I can see your mother feeds you good healthy food" and then she asked him if I still made our toothpaste. He said yes to which she replied "aren't you lucky".
Ruth has old holes in some molars. There does not seem to be major change since last year. On the other side of the mouth (with worse holdes) the teeth have fallen out. So I was pleased I refused fillings for them last year (and they didn't cause any pain before the teeth did fall out). So it worked out really well.
Hannah had a filling fall out almost a year ago. She doesn't have any pain in the area, but it is a pain to clean (as it takes so much more effort). So she offered to just "fill it up". It was no performance at all - just cleaning it out and re-filling the spot. No injection, no hassle and over so quickly. So all in all it went so very well.
Asher had her appointment on Thursday morning. That didn't go very well, but there was not much expectation. The ladies were really great, singing with her to relax her and eventually quickly just having a look and counting the teeth. She is also happy that they all look fine.
I have learnt from how well Asher did entering the EEG room on Tuesday, that she needs to be busy with something. I should have had her little box of 4 books. She always reads them ALL, so if she had started them outside while we waited, she would have wanted to carry on once inside, which would of help distract her from this "strange new place". As soon as we walked in she had started screaming. So hopefully I have learnt for next year. :-)
Wednesday also saw the internal container walls being finished up alone with the electricity. What a wonderful blessing this father and son have been to us in getting this all set up. We are overwhelmed with appreciation and gratitude.
On Wednesday evening I travelled with a friend in to town for a Parent to Parent Coffee and Craft night. I had a great time making this banner and an even better time chatting with the other mothers. It is always so very encouraging and so helpful to talk with people who understand in a deeper way what we are going through.
On Thursday 1st June Asher had a 2 minute Tonic Clonic at around 5:30 while I was out with the girls at dancing. I always start worrying when it goes over 1 1/2 minutes that it may end up a really long one, so I'm glad I didn't have to be there for it, and I am also very thankful it did stop when it did.
Friday 2nd: Got the monthly children's photo this morning before the school ones headed off.
We had expected to wait 2 weeks to get the blood results from the extra chromosome test that I had done. Wonderfully I got the results this morning already (just a day after 1 week!) and we are no a LOW risk! Thank you Lord.
They can't say with 100% accuracy that the baby will not have Down Syndrome, but it is very unlikely. We are so very grateful.
An added bonus from this extra test (being focused on chromosomes) is that we could get confirmation of baby's gender (which I did want to know).
It's a girl!
Although we all would have loved for Hezekiah to have a brother, I do think that a little sister for Asher will be a huge blessing to her. God does have a very good plan in this all.

And just to clarify about the Down Syndrome testing. I have nothing against people who have Down Syndrome. Asher has had some Down Syndrome children in her groups at Champion Centre and they are lovely children. They do have challenges though and there can be a lot of extra work for the family in helping them overcome those challenges. So for us it was more about getting mentally prepared for that extra work if there was a strong possibility. I am glad we did the testing as Ruth specifically said she is so glad. She says she has forgotten what it is like to have a "normal" baby. Ruth loves Asher dearly and is the sibling that spends the most effort teaching Asher new things. I think this does however make Ruth very aware of the extra effort that it takes.

Hannah made this bird feeder at school this week. As our cats catch birds, she is going to give it to a friend to hand up. :-)

Sunday, May 28, 2017

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. :-)