I completely forgot to write the blog last week! It was days later before I realised. I guess that's a reflection of my mental state! Things have been pretty busy around here. We survived Easter Sunday and Jeff's birthday all rolled into one day. Arley always gets very dysregulated when things change up (like holidays), so this was a double whammy. We started the day with a 9am Easter egg hunt. This is the first year we didn't hide the eggs the night before and then get woken up at the crack of dawn on Easter morning. It was so much better! After the hunt we were done with Easter and we moved on to Jeff's 53rd birthday. We had Mum & Geoff over for cake (really brownies, Jeff's fave) and hot cross buns, and we had a nice little family morning tea and Jeff opened presents. In the afternoon Jeffrey and I went to Mooloolaba to ride our electric unicycles. I did fall off mine, right on to my butt, but thankfully only Jeff saw, and I didn't hurt myself! LOL
We have been busy with therapies etc as usual. Arley now has a new 'mentor' - an 18 year old boy who comes over and plays computer games with him. His name is Alex, and Arley loves his sessions with him. Carmie is still attending her three social sessions a week, and apparently this isn't enough, because she is starting another Dungeons and Dragons group on Monday, and Arley is starting too! Luckily I can utilise the pick up and drop off service this place has now, so I don't have to drive nearly as much. I'm hoping Arley loves the group and no dramas happen. I'm a little worried to be honest, but we have to try.
Carmie had her first sleepover on Easter Monday. She spent the night at her friend Piper's house. It was a great success, even though Carms was quite nervous. Piper's three cats definitely helped! Arley was so jealous - he kept insisting that he was going on the sleepover too, and kept asking, "When are we leaving? What should I pack?" and other silly questions. He was very ticked off, so Jeffrey and I took him out for ice cream and a movie that same night. I think he felt quite grown up, and he didn't give Carmie as much grief as he would have when I brought her home the next day.
Carmie had her appointment with the cardiologist. She got diagnosed with 'autonomic dysfunction' - because the cardiologist doesn't like to use the term POTS. Basically her nervous system doesn't regulate her blood pressure very well when she goes from lying or sitting to standing up, and then it all gets worse when she exercises. It's why she has been ill so much. He also confirmed her hypermobility and said it's quite common for kids with hypotonia and hypermobility to have this autonomic dysfunction. It won't go away, but we can improve her health in small steps so that eventually she will feel good again. She has to drink 2 litres of water a day, eat three meals and three snacks, and start doing a few minutes of exercise here and there until she can build up some tolerance and strength again. It's so good to finally get an answer, and have an action plan! She has been coming for walks with me every day - she can only get to the end of the street, but next week I'm going to push her a little further. Small steps!
We have had pretty rotten weather lately - so so so much rain. We've just had a few lovely days, but apparently the rain is starting again tonight and will last until Monday. I guess it's not too bad, we are such homebodies anyway. We have everything we want here at home. I'm even painting again! But the rain has brought out the critters. We were visited by a giant python one night - that was a little scary. It was about 7ft long. And this morning when I came in from my walk, there was a little critter in the hallway. It looked like a cute rat, but it skittered down the length of the hallway and turned right into the back part of the house, and it was definitely hopping like a rabbit, so I think it's another antechinus (very cute Australian mammal), and it's living with us somewhere in our home. I'm hoping Bella doesn't find it, it will be a bloodbath!
Our friendly neighbourhood python
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