Thursday, February 22, 2018
A very up and down week for Asher
Hezekiah had a runny nose when he came home from school yesterday and when he woke this morning he had a fever and just slept the day away. He likes to be around people, and so just moved around the lounge (on and off different chairs through the day). He didn't even have the runny nose today. He did vomit in the evening and again during the night. So Anastasia and I stayed home with him on Sunday and he missed school on Monday to make sure he had the 48 hours clear.
RIGHT: The roof and walls went on to the cottage next door very quickly. It's a metal exterior and that made it very quick to get done.
Hezekiah had a relaxed day on Sunday (staying in his pjs the whole day) but already felt much better.
Thanks for sorting Ruth - I love having things a bit more organized and just haven't gotten the time to do it myself.
It's fun to see more and more areas where Ruth is very similar to me.
She benefitted from the day home resting, but is already feeling much better and will be back to school in the morning.
Asher enjoyed the rainbow ring during group music (another of her favourites) and then even allowed Dad to massage her during the last massage song. To think how far she has come. Last year she just wanted to run every time this song came on. Slowly she learnt to just sit through it and eventually allowed a little bit of touching. So it was special to see her getting a nice massage from Dad.
Thanks to Sarah for taking photos for me while I was feeding Anastasia.
And thanks to Brendon for taking the day off to join us. It made it so much easier for me as other than when Anastasia was feeding, he looked after her so that I could focus on Asher and the guests.
Once the sessions where over I got to spend a bit more time chatting through things with a few of the therapists and her guests. It was good to have a quick brain storming session and also get to answer questions and allow the guests to understand a bit more about Asher and how she learns and the progress she has made over the last year.
Originally Asher had a hospital appointment for this afternoon (and that was the main reason Brendon had taken the day off), but as we had seen the doc during her hospital stay last week, he was happy to cancel he appointment and have a check up again in a months time.
Hezekiah enjoyed making a huge tower this afternoon and asked that I come and take a photo of it. Great job Hezekiah.
A local bible study used to be every 2nd Wednesday but has now been moved to Tuesday and so we went as a family for the first time this evening. We had a shared dinner and then the study. During dinner Hezekiah and Jens had a great time playing. Such cool masks.
Thankfully it went really well with Asher and so it looks like we will be able to attend together more often.
St John Youth was cancelled today due to the potentially bad weather with cyclone Gita arriving, so it was nice to have her join us this evening too. Although there was a lot of rain through the day and we felt it was safer for Rachel not to drive this evening, it thankfully was not too bad in our area. We have had storms that were a lot worse. Other parts of the country didn't fair as well, so it was still a big event for the country.
Wednesday 21st: Asher was due to have a school visit today but had a seizure at 7:40am. When she woke after her sleep she seemed ok, so I took her to school (although a little late). She was not very happy and within half an hour of me being home they called me to pick her up. We didn't know if she would settle, so it was worth trying.
She looked like she was perhaps starting with a cold (although the runny nose may have been because of her crying) and so it was good for her to be home. She just got worse through the morning and was eventually having so much neurological activity that I was relieved when just after 1pm she had another seizure.
LEFT: I just love how Anakin lies on people. He is too big to just fit on a lap, but that doesn't stop him. So cute.
Her new drug arrived yesterday and although it's not ideal to start with her feeling unwell, we also want to get more seizure control. So we started that this morning. It's an addition medication rather than replacing the one she is already on.
The research indicates that the help that it may give is to get her other medication working more effectively. We know the drug she is on helps a lot - so if we can get it working even better - that would be an answer to prayers.
Rachiel popped in for a visit this morning. While she was here Anastasia rolled over on her own for the first time. She did it a couple more times through the day and so I took this photo to remember it.