We finally were able to get Arley's blood tested this week. Holy moly, it has been a long wait. This was our fourth attempt over two years. He was booked into the hospital this time. They were extremely thorough, starting with a 45 minute phone consult, then they emailed me a walk through of the hospital, videos for Arley to watch, and a game-plan worksheet for him to fill out. An OT met us at the hospital, and we had a team of four to draw his blood. He started to freak out, so they gave him gas. I knew everything was going to be ok when he asked, "Why do I feel so funny? Have you done the blood test yet?" He sat through it like a champ and they took five vials, enough to run a nutrient panel, test for coeliac disease and the genetic marker, and get his blood type. Afterwards I took him out to brunch for a treat. As a reward, support worker Clint is going to take Arley fishing next week, and Taekwon Do instructor Mr Kelly is going to give Arley a weapons demonstration. I just love that we have people in the kids' lives that go out of their way to help and support. Clint sent before and after videos too. We are really building up a great support team! And Arley got his blood drawn! Woot woot!
The weather has gotten really hot this week, so we've been swimming in the pool. Summer is fast upon us, and I'm looking forward to it. It's also nice to have Jeffrey home, knowing he isn't out working in the heat. On Friday we had a family trip to Australia Zoo, because Jeff hadn't been there before. We are making the most of our annual passes. It was a lovely morning.
Carmie is doing well. She is still writing her story, and it is so good! It's 3500 words so far, and she says she's not even close to finishing. I look forward to every installment. She is also doing a lot of drawing and animating on my iPad, which is great, except that she is always stealing my iPad! She wants her own iPad Pro and Apple pencil for Christmas, so we are looking to find her a second-hand one.
Sad news this week - Arley's crab Hermie died. He climbed out of his shell and went belly-up. Arley was hoping he was just molting, but he wasn't, and Arley was really sad! We had to keep the shell-less crab in a dish of saltwater for a day and a half because Arley wanted to make sure he was dead. He finally let us bury him in the garden today. The kids are wondering why we are so bad at taking care of small pets, and I'm starting to wonder myself!
Speaking of pets, we've noticed that Bella is pretty much totally deaf. She's getting old, and it's making us all really sad. So many tears over a little crab, I dread to think how shattered we will be when it's Bella's turn. Ugh.
I have noticed that getting Arley out of the house is a lot easier these days, which is such a relief. It's because he takes my iPad and noise cancelling headphones everywhere, so his anxiety is a lot less. He knows he can always close the world off with the iPad. I wish we had done this earlier! Arley also found a new lunch that he likes, which is a plain bread roll with vegetarian pepperoni on it. This is huge for us. We had another visit with his dietitian this week, and early next year he is starting food therapy. We are hoping he can start to touch food with his hands, because apparently that's the first step to eating. I'm very hopeful!
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