Sunday, July 1, 2018
Chess, stress, bones and beating times
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 and Dad headed to the tea rooms this afternoon.
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.
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.
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.
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.
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.