I am totally overwhelmed at the moment - the last few days have been so busy, but not with anything that makes me feel productive, and I have a lot of work building up on my plate. I haven't had time for my morning walks or bike rides - I think I only got out twice this week.
The crappy news is, we got Carmie's coeliac diagnosis confirmed. I managed to get her in to see a paediatric gastroenterologist here (they rushed us forward, originally they couldn't get us in until November, so I was very relieved). He told me she doesn't need an endoscopy. Her blood test results were high, and one of them was 90. He told me he's never had anyone come back with a negative when that result is over 80. As a formality he had her get one more blood test, but he said to start gluten free the next day. If her nausea isn't gone in 6 months he will have to do an endoscopy to check her oesophagus, so fingers crossed. Carmie and I left his office and we went to the mall before her blood test, and she had her last gluten treat. Then we got her bloods drawn, and she was very brave. The gastro said we also have to get Arley tested, but he is requesting that I get a referral from our GP to get Arley into the paediatric sedation clinic at the hospital to get his bloods done. And we also need to start seeing a dietician, so this morning I went back to the GP for those referrals. She thinks Arley's referral will be refused, but we shall see. She said she'll keep trying. Argh, this is so full-on.
Yesterday we met up with the kids' friend Lexi and her brother Felix and mum Nicky at the rock pools at Mooloolaba, and it was a lovely morning. The kids caught tiny fish in the rock pools, and then did some jumping off the wall into the sand. We went and got ice cream, and it was a really pleasant morning. I really like Nicky, and it's good that I have a friend here already! Afterwards Carmie and I went to the supermarket to get her loaded up with gluten-free groceries. They are SO expensive. We got a lot of staples and junk food too, because I don't want Carmie to feel deprived. I'm going gluten free with her, for support and to see if I'm affected too. Sadly I had just gone to the supermarket and bought a week's worth (more like two, I am an overstocker!) of groceries containing gluten that Jeff will have to cook up and eat on his own. And we are going to sit down together and create a list of meals that we can make that are gluten free. I'm truly hoping Arley isn't coeliac - he is SO hard to feed, and his go-to foods are based on gluten. I'm not going to think about it again until we know for sure, it's too stressful!
On Monday we went to Kings Beach sea pool, at Arley's request. When he wants to do something out of the house, we generally jump at it, because it is a rare occurrence! The problem is, we got there and discovered the water was too cold to swim in, despite the weather being 26 degrees. Because Arley is so rigid and his idea of what was going to happen changed, he got dysregulated and mean, and he was pretty awful to Carmie and awful to be around. It was very stressful, and Jeff took off for a long walk. Carmie wasn't well, so I felt even worse for her. Arley is insufferable and difficult to manage when he is like that. I was able to convince him to come down to the rock pools to try to find some fish, which he did, and that definitely helped his mood. Sometimes it feels better to just stay home.
On Tuesday morning we had our second family session with our therapist. She was teaching us about the sad scale, versus the happy scale, this time. I've noticed that Arley usually is at either end of the scale - neutral or really happy, or really sad. He doesn't have much awareness of the middle range. It will be really interesting to hear what the therapist says when Jeff and I meet with her privately.
We have play dates arranged for the next two days, and then I'm really hoping to have next week be less busy. I've got to catch up on work and find meals and recipes for Carmie. And I need some me time so I can stay sane!
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