592 + 488 Weeks

It has been a pretty huge week.  On Friday morning the kids had appointments with their new GP.  We quite like him.  Arley had an ECG to check his heartbeat, as it has been really high.  The ECG all looked good, but even so, today I had to drive him down to Caboolture to see a cardiologist.  He had an ultrasound done on his heart, and all is well - he apparently just has a naturally high heart rate.  The cardiologist said in 5% of cases they find a genetic disorder, so I'm glad we went in, as now I don't have to worry about it.

After the GP on Friday, Arley asked me to take him to another zoo here, called Wildlife HQ, because they have capybaras there, and they are his all-time favourite animal.  Carmie chose to stay home.  Arley and I went straight to the capybaras, who disappointingly were lying around at the back of their area and we couldn't see them very well.  We traversed the whole zoo, saw some amazing animals, had lunch at the cafe, and then went back to the capybaras who had relocated to the front and we had a great view of them.  We stayed with the capybaras for a good 20 minutes - Arley just LOVES them.  It was a great outing, with smiles the whole time.  One on one is so much easier for Arley, as he has no competing attention and less noise and chaos around him.

On Sunday afternoon my friend Andrea and her partner Cav came over to look after the kids, while Jeffrey and I drove south of Brisbane to Sirromet Wines for a Crowded House concert.  I have wanted to see Crowded House for so long (!!) and finally we did, and they were awesome!  We had great seats, and at the end we even made a run for it and got down in front of the stage like naughty teenagers.  It was our 14th wedding anniversary too, so it was great.  We got home after 11pm, and Andrea said the kids were angels, so it was a complete success!

On Monday the kids' carers took them bowling and I worked on my painting commission.  Not the break I wanted, but it's good to paint again.  Carmie and I had Taekwon Do that afternoon, and then the next day we joined Arley in his private Taekwon Do lesson.  I thought the lesson was going to be a bust, because Arley got upset with himself for not being as good as me and Carmie, and he had to go have a calm-down break in the car.  After ten minutes he came back though, and completed his lesson, so that alone is a win!  That afternoon we went horse riding, and Arley said he wasn't going to ride, but Lisa got him up on Tao and he enjoyed himself.  Poor Carmie got stepped on by her horse Chilly, and had to ice down her foot and have a good cry before she could continue her lesson.

Yesterday I took the kids to Chambers Island for a session each with Clint, and then today I had to get Carmie to the physio.  She has one more session before she gets a break for a couple of months while she practises the exercises.  I am looking forward to the break, and I bet she is too!

So we got two new 'pets' this week.  Arley caught a praying mantis nymph who now lives in his own terrarium next to the hermit crabs.  His name is Wiki.  And then the other day Jeffrey brought home a stick insect that he found at work.  His name is Slick Rick, and he has his own terrarium next to Wiki's.  We have a growing menagerie of unusual pets now.  And somehow it's my job to keep them alive, and I can't bring myself to touch any of them!!

I'm looking forward to this weekend - Jeff and I are going to another concert.  We are seeing Colin Hay, and going out to dinner beforehand.  Two date nights within a week!

Arley getting his ECG.  We took this photo to scare Lolo :)

At the zoo

This is a cassowary.  Look at its feet!

Arley and a capybara

On our way to Crowded House

Slick Rick

591 + 487 Weeks

We've had a good week.  Busy, but good.  On Friday we had four kids over and three mothers.  It was a bit of an experiment.  I invited Arley's friend Liam over - they like to play Roblox together.  I also invited Carmie's friend Annabelle over, as well as new friend Tahliah and her younger brother Mason, plus all the mums.  It worked out really well, with Arley and Liam disappearing to play Roblox, and the other four kids playing outside.  After a while they all went in the pool together.  It took a bit to get Arley in, and he insisted on wearing water shoes, but he did get in, and he had fun too.  It was so nice to see Carmie and Arley having regular childhood experiences - swimming in the pool with friends.  We will be doing it more often as summer comes.

On Saturday morning Carmie went to her first Pony Club with Riding for the Disabled.  There were two other girls there - apparently usually there are a few more.  Each child had their own horse and their own carer to walk alongside.  Carmie's carer was non-speaking, so that was interesting for her.  Carms really enjoyed it, because she got to ride for over an hour.  She'll be going back every other Saturday.

On Saturday night Jeff and I had his work friend Ben and his girlfriend Maria over.  They came over for dinner and a play of the VR.  We all played a game called Acron, the kids included, and it was a ton of fun.  It's been a very social week!

On Monday the kids' carers picked them up and took them to Australia Zoo.  They stayed away for three hours, so I had a great break, and the kids had fun, with absolutely no dramas! Monday was also Halloween.  Arley was stressing in the lead-up because he didn't have a costume.  Then the kids decided to go as murderer and victim.  They had a blast.  I had to buy back much of Carmie's candy because of her dietary restrictions, but she didn't care.

I accidentally glutened Carmie on Sunday night.  Bad Mummy!  I'm usually so vigilant, but I made a mistake.  We didn't get to Taekwon Do on Monday, but we made it to Arley's Tuesday private lesson (which was great!).  Carmie was feeling off.  Today I took her to her physio appointment and she broke out in a rash.  She also didn't sleep last night.  I feel very guilty!

I am doing a large painting commission, and it's so good to paint again.  I miss my studio, and my setup here isn't ideal, but one day I'll get my own place to paint again, and I'm looking forward to it.

Pool play with friends

Riding at RDA

Halloween

Carmie killing her brother

At Chambers Island

590 + 486 Weeks

Phew, it is SO hot! We had a busy morning, starting with a visit to a farm so the kids could pet and feed the animals.  They loved it, particularly Arley.  It was a different farm to last time, and I paid to have the session all to ourselves so that Arley didn't get overwhelmed and he could participate.  He was very engaged.  Both kids milked a goat, and fed the baby goats, along with alpacas, a cow, chickens, some ducks, and horses.  Arley wants to go back every week, but I'm shooting for once a month.  It was great - until it got too hot and we had to leave, but we were there for almost an hour, so that's a win!  Afterwards Arley had his last session with his behaviour specialist while I took Carmie to her physio appointment.  We skipped Taekwon Do this afternoon - it was just way too hot.

We've had a good week.  On Monday the kids' support workers took them out, and I had three hours alone!  That is the longest time I've had alone in the house in two and a half years!  I didn't know what to do with myself!  Their support workers took them to an indoor play centre called Rush Adventureland.  The kids were very excited to go.  Arley managed to play for about half an hour before he got on his iPad and shut out the world with his headphones.  Carmie played longer, and then they all went out for ice cream.  It was a successful first outing, and I'll get three hours to myself every Monday if all goes well.

Carmie had an assessment with Riding for the Disabled on Tuesday.  She will be starting their Pony Club on Saturday, and it will run every other week.  I hope she goes OK when the weather gets hotter.  She's excited about it - we're hoping she makes some friends with a shared interest of horses.

Arley met his dietitian yesterday.  I have only done phone appointments with her, but now we will be meeting monthly in her office.  She had large containers filled with different snack foods, and Arley had to choose three and try them, and rate them from good to bad, with a couple of tastes of each food.  He did really well trying the snack food and she was surprised.  However she soon saw what we are up against when she tried to get him to touch a carrot with his finger.  There was nothing that was going to make him!  When we left she tried to give him the snack that he really enjoyed, and he wouldn't take it - he has zero interest in food.  We have a plan going forward, but she said she thinks it's going to be a very long time before Arley will be eating more and better foods.  It's very stressful when you have a kid who won't eat, and only eats snack foods when he does.  We are waiting to get him in for a blood test at the hospital where they can sedate him with gas, but we seem to be waiting a very long time.  Right now we are focusing on getting him to eat six times a day, and it can be anything at all.  Such a challenge!  It boggles my mind how our Coeliac kid is easier to feed!

Fingers crossed for another good week ahead!

589 + 485 Weeks

This week has flown by.  We are way too busy for our own good, and I have to take one day at a time or I get overwhelmed, but it's been a good week.  Carmie spent time with her support worker Abby on Monday and I spent that time with Arley.  He has been in a happy mood quite a bit this week, and amenable to reading new books and playing games.  We've been going to Taekwon Do and Arely's private lesson this week was the best one yet.  That afternoon the kids had a great horse riding lesson too.  Carmie started physiotherapy on Friday last week, and she had another session today.  Her physio has suggested she start swimming lessons to build up her strength, so we will be doing that next year when we have less on.  Carmie is such a good sport.  The physio sessions are clearly tiring for her, but she hasn't complained, even when I make her do them at home, which she has to do three to four times a week.  Both kids had OT this morning.  Arley and Toni the OT finished their sensory garden last time, so today they started organising their next project, which is to give Arley's bunk bed and bedroom a makeover.  He is very excited about it and is creating Pinterest boards with all of his ideas.  Carmie finished a piece of artwork she has been working on in Procreate.  She has spent hours and hours on it, so she is very proud of herself for finishing.

We have a ton of rain forecast for the next few days, so we will have some down time, which I am really looking forward to!

Doing carrot stretches with Dude

At physio

Carmie's artwork: a water dragon