Wednesday, May 16, 2018
At 8:45pm Asher had a 1 minute Tonic Clonic. She was really restless for at least 20 minutes afterwards. It's always so hard when she feels so terrible and there is nothing we can do to help her feel better. It's always such a relief when the pain / discomfort settles and she can get to sleep.
Anastasia has started enjoying making some lovely noises. She so enjoyed "talking" to us this evening and it had everyone laughing and having fun with her.
It was tricky to get a good video of it - and we only just got a tiny bit at the start of this one. At the end though, you see her lovely response when I call her. Without fail I will call her and her face will just light up.
Unfortunately Asher had another seizure at 9pm this evening and was again restless for at least 20 minutes. And then at 10:30pm she woke up and was very unhappy. There was a lot of neurological activity (even though not a "normal" seizure) and so we gave her a dose of Midazolam to stop it. Thankfully it worked quickly and she could say "hi" and then get back to sleep.
These photo was on Tuesday - having a rest with Ruth after school. She obviously wanted some extra physical contact today and so Ruth was a great big sister in giving her the cuddles she needed.
She unfortunately had a really bad few nights. This evening it started at Bible Study with her having a bit of an episode.
On Wednesday night her "bad" feeling happened at 8:30 and we again had to give Midazolam to stop it. Her appetite has also been really low this week, so it's been hard to see her struggling.
On a positive note, she is learning quickly and even said "bad" on one of these occasions. Not "feel bad" but just bad, over and over. At least she is telling us accurately how she is feeling.
Wednesday 16th: Hannah headed off on a school camp today. She has been so excited and counting down the days. They will be back on Friday afternoon.
On Wednesdays the teacher aides all have a meeting first thing in the morning, and so I stay with Asher till they are done. It was really great to see her enjoying the kinaesthetic sand (have you felt it before - it's wonderful to play with).
RIGHT: A fun app that Asher has at school. It's a bit like a puzzle for her, but she will slowly learn about letters this way.
There was a planned power out today as they upgraded a lot of power poles around us.
Thankfully we did know about it, so we had made plans for Dad to BBQ when he got home. Rachel and I used the wood burner to heat / cook our lunch. It was not the best day for the work or a BBQ, as it rained solidly the entire day.
Ruth playing with her two little sisters. Quite a few children in Ruth's class will be going to boarding school next year. We have chatted about what some of the advantages and disadvantages would be (just in theory - as the cost makes it not even an option to consider). One huge reason I don't think Ruth would enjoy it is that she would miss these two too much. Ruth is so good with little children and enjoys them so much. She has a special relationship with both of them.
Anastasia has really been enjoying this crocodile that she was given.
More fun with Ruth.
Friday, May 11, 2018
Ruth's first day off at netball (as it was rained out last Saturday). It is a grading day today, so she will have a lot of shorter games.
Asher enjoyed brushing Hannah's hair this evening. Hannah didn't enjoy it all that much though. Thanks for your patience Hannah.
BELOW: I just spread them out along the wall. I only did 2 of the 3 bunches, so I have even more to do next year. We have loads of daffodils at the garage, so I plan to put a row of them in front of these next year too. There are some daffodils here, and that's what gave me the idea.
Such a pretty colour.
Monday 7th: Rachel started a defensive driving course this afternoon. There will be 10 hours of lectures over the next two weeks (Monday and Wednesday afternoons) and then she will have a driven test with the assessor. Getting this course done will allow her to go for her full licence in October (at just 17 1/2 years old).
Ruth - year 8. Hannah - year 6. Hezekiah - year 2. Asher - year 1.
We had Asher's IEP (Individual Educational Plan) meeting this afternoon before school finished. Anastasia was great and just fell asleep in my arms - while looking around at everyone. It was a excellent meeting with lots of positive feedback on things that are going well. It's also good to discuss "next steps" and talk through some of the issues. I am again so very thankful for the team of ladies that are supporting Asher.
Wednesday 9th: She had another seizure today at 1:15pm. The teacher aides all had a meeting at 11, so Rachel had gone up to help watch Asher while they were busy. It wasn't long after Rachel left that she had the seizure. She had refused to eat lunch too. I started wondering if she had a UTI as she had been touching herself a bit before school this morning and was refusing to drink or eat at school.
Thursday 10th: Another seizure today at 12:20pm, just as she was about to start her cross country practice with her class. I'm glad we have started the antibiotics, and hopefully they will start working soon and this run of seizures will stop.
Ruth and I had a long day in town. As a final precautionary check, she had a heart scan this morning. She has a few markers of Marfan Syndrome, and although her specialist thinks it's unlikely, he agreed that as we don't have any family history for Ruth, it would be good to just check that all is fine with her heart. She does get chest pain at times, so it will give me peace of mind knowing that her heart is ok.
Ruth and Hannah decided to rake up some leaves to have some fun this afternoon. Ruth came to show me the photo on the left and I just though they had put shoes down.
Only then did I realize that it was actually Hannah under it all. So I suggested that she stick her hands out too. So they went out again and this photo was one of the fun results.
It was a very busy day for Rachel today. She started with a introductory hair dressing course in town today. It goes on for 6 weeks, each Friday. After that she went for an interview at Vbase - the catering company she did her hospitality course with during the holidays. Then she rushed home to get a lift to the St John Competitions camp in Hamner for the weekend. So it was a very full day for her.
Friday, May 4, 2018
After dinner the children sang some songs for them, including showing the faces pulled at the end of a haka. Girls don't do this part - but if they did, Hannah would be very good at it. Hezekiah was pretty good too, he just needs to lift his chin up a bit so we can see him better. :-)
It was great to catch up with Eben after so many years and also special for us to get to meet Minette.
I wasn't sure how happy Asher would be in the holidays with not being able to go in the car every day (she just loves the car). Thankfully she adjusted fine and then adjusted back into the school routine easily again this week.
Hezekiah's gun and phone creations from school.
They are working on telling the time in his class. So he had this to bring home today. I always take a photo straight away as then we can keep a record of it all.
He made sure I took a photo of the back too. Home time is obviously very important. :-)
She could not just easily apply her butter icing today. So she had to try this method. It worked ok, but the ganache was just too soft and was slipping off the cake (from that middle "gap" because of the cakes not being cut flat). So she did a good job in getting it presentable. It was a good opportunity to learn some lessons.
Great job Rachel.
Children's monthly photo taken this afternoon.
Thursday 3rd: Unfortunately Brendon woke with a terrible migraine this morning, so he spent the whole day in bed. He was feeling better through the afternoon though, and so we were still able to go out for dinner. Normally his migraine medication works well and within a couple of hours he feels better. This time it didn't work though, and he just needed the extra 8 hours of sleep.
Brendon had an open venison sandwich with such amazing fries.
I had a chicken dish with cheese and bacon. It was very tasty.
So thankful for the 21 years we have been married, and for such a special evening to celebrate.
I'm glad we had an early dinner and were home when Asher went to bed, as she had a seizure just as Brendon was putting her into bed. The teachers had described her having a conscious Tonic Clonic seizure, and Brendon saw this too this evening. It was only 30 seconds but she was restless for an hour before she was finally asleep.