Friday, October 27, 2017

2 weeks fly by

Monday 16th and the start of the 4th term. A short one this time with only 8 weeks. School finishes for the year on Dec 12th. So just less than two months and the school year will be done. School starts up on 30 Jan and Asher turns 5 on 16th Feb. So "school" is not at all far away for her.
I didn't even bother taking my camera to Champion Centre on Tuesday. Perhaps it's an indication of my energy levels. :-) It was good to get some time with her OT going through the ORS application. That will most likely be submitted next week. It's the one time all you focus on are the struggles. So it was an emotional week finalizing that all. It's hard when you have to honestly look at how hard things are. It was also emotional getting her neurologist's report for the application and on diagnosis we don't only have her epilepsy and autism, but also "Global developmental delay with intellectual disability" as well as "Significant behavioural difficulties".
One thing that I learnt at previous Parent to Parent training is that there is grief involved with having a special needs child. In summary - grief at the loss of "normal". I was glad I had the extra training in the holidays, as it reminded me that the grieving is not a once off thing (when you get a diagnoses for example) but is something that happens regularly through the child's life, as they reach different stages.
With Asher heading into school soon, it is most definitely a time of grieving again. It's been good to just be ok with letting the tears flow. It is sad, and there is no need to deny that. It is also wonderful to then get comfort from the Lord, knowing that He is close to us through this all.
Above: This afternoon she was scooting around the deck so well on this two wheel scooter (she has a 3 wheeled one that is obviously much easier). By the time I had my camera out she had lost interest. It was great seeing her improved balance on it though.
It was a nice quiet week which I was glad for as next week is going to very busy. Asher had a seizure on Thursday at 12:30pm. Again just a 1 min TC with a little bit of extra TC activity afterwards. Thankfully she didn't have pain this time and her shivering wasn't too bad either, so she got some good sleep through the afternoon. I was especially thankful that it didn't lead to a cluster as it has the last few times. It was just the one for the week.
Above: Sunday afternoon. Rachel made pancakes again today and Brendon knew this time to just make two tuna pancakes, so that he could actually get to eat one. Asher doesn't manage to feed herself one (as it just unrolls) but she enjoys eating Dads. :-)
Ruth had made slime at school on Friday and had gotten one dry piece nice and soft this afternoon. We didn't take a photo but there was so much fun later when Ruth walked into the lounge and said "I wonder if it will stick on the roof" and threw it up. It did stick, for a couple of seconds and then fell off - leaving a bit behind. The fun and games in trying to get the last bits it off the roof had most of us almost in tears with laughter.
Above: Asher enjoying some giggle time with Hannah.
Monday 23rd: It was a public holiday today, so it was a nice relaxed day at home. Rachel made a huge pot of Taco mince (to have a few extra meals ready in the freezer for the weeks ahead). Ruth also got a quick lesson on how to make biltong (to also stock up on nice protein snacks for the month ahead).
Hezekiah having some rough and tumble fun with Asher. It's only really recently that this has become a game Asher understands to be a part of.
What a beautiful day for a public holiday. Just a pity Brendon had to work.
These two enjoyed a "scooter roller skate" game together. Ruth often comes up with great ideas.
Asher really enjoyed the scooter today and made sure she got even more time out there after Dad was home. :-)
Tuesday 24th: Champion Centre this morning and half way there I realized I had not given Asher her new Charlotte's Web Hemp oil before we left. We started her on a low dose at the beginning of the month (10 drops of the 500 strength) and have been slowly increasing it. She has been on 40 drops since the 17th. I felt terrible that I had forgotten, knowing that it may indeed be helping. Time will tell. It made me commit to putting it as a priority every morning though. Thankfully it was just a short seizures again, although she is going blue with these lately. I had an appointment with my midwife on the way home, so didn't want to leave early. It was nice to let Asher just have a good sleep though (although it again took a while to settle). I enjoyed a half an hour lie down too and then we headed off.
Brendon is attending training on Tuesday's in town for a while, so on his way home he met us at the Health hub. It was nice to have him there for some of the visit (at least the most important part when listening to baby's heart - the time when Asher can be the most challenging).
Wednesday 25th: A friend came for a visit after lunch today with her 4 month old daughter. She is lending us their Moses basket. I've never used one before, and look forward to having the extra bit of space in our room for a couple of months (before we need to put the cot up). :-) It was quite something watching Asher with the baby though. She just kept saying "baby" and wanting to touch her head. So I can see that we are going to spend a LOT of time training her on being gentle with her baby sister. I can also start getting a picture of how much her little sister is going to have to get used to. :-)
Rachel had a drive into town this morning for a dental check up. It was her first solo trip into town, so it was good that it went well. She will have to go again next week to get some work done.
In the evening I went to the pamper night at the Champion Centre. They put it on every year for the mothers and it is such a treat. Paula (my social worker there) had asked me on Tuesday if I was happy to go straight in for a massage when I arrived. That was fine with me, and I ended up getting such a treat (a full hour rather than the standard 30 min).
Thursday 26th: This afternoon Brendon and I headed in to town to watch the Music Festival (videos on their own post). Paula was instrumental in suggesting and then organizing (she found funding for the cost) for Brendon and I to stay overnight in town after the show. We stayed in this lovely B&B. No rush in the morning. We got some shopping done and then some enquiries into phones (Rachel and I both need new and better phones). We still had loads of time before lunch, so we stopped at the Pegasus lake and just chatted before heading to a coffee shop for a delicious lunch. We made it back in time for the School Assembly, but I will leave all of Friday's photo's for the next post. It was so good to be able to get away for a night (we can't remember when that last happened) and have those extra hours to just be together and chat on Friday morning.
A friend had Hannah and Hezekiah stay at their place from after school on Thursday and Ruth got a lift home with a different friend from the Festival. So Rachel only had Asher to watch overnight. It was good to get this "practice" in before baby comes, as she will have a night or two at home with Asher then.

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