Sunday, June 18, 2017
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.
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.
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
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.
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
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.
After lunch the girls got their guitars out, so I gave him mine and they had a bit of fun together.
Getting some dishes done together.
Thanks Daniel for bringing your "toys" with to help us with these jobs.
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
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.
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.
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.
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.
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.
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.
Friday 2nd: Got the monthly children's photo this morning before the school ones headed off.
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
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. :-)
And they are off.
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.
Well done Hezekiah.
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.
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.
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. :-)