594 + 490 Weeks

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!

At the zoo.

My grey-eyed boy

Right after his blood test.

Burying Hermie.

593 + 489 Weeks

A week has gone by already, I can't quite believe it!  We are down two pets this week - somehow we managed to kill the stick insect that we befriended, despite researching how to care for it and doing everything we could.  We feel pretty guilty, it was quite sad.  Because of this Arley decided to set his praying mantis nymph free, and as soon as he did, we saw the nymph catch an insect and devour it, so that was fun :)

Jeffrey and I went to see Colin Hay on Saturday night.  First we went out to dinner.  It was a great night, and Colin Hay was awesome, really funny and an amazing performer!  It was so good to have another night out, I felt like a normal human being rather than a mother with two high-needs kids.

We had all therapies as usual this week.  Arley had his best session yet with Clint, which was a nice surprise.  At horse riding, Carmie's horse Chilly decided to lie down for a rest in the middle of the arena, and Carmie managed to skedaddle out of the saddle before he rolled onto his side and crushed her leg.  It was pretty scary!  One minute Chilly was walking along with Carmie on his back, and a second later he was rolling onto his side.  Carmie was quite lucky she wasn't hurt.

And big news - Carmie, Arley and I all graded for our yellow belts in Taekwon Do this week!  Carmie and I did it on Monday night, and Arley did it the next day at his private session.  He is so down on himself because he does different things to us and he can see he is doing things differently, but I believe he is secretly very proud.  He has earned his yellow belt and we are all proud of him.  We are proud of Carmie too, she has worked hard.

The kids' support workers took them to the movies on Monday.  They saw the new Black Panther movie, which was really long, and somehow Arley sat through the whole thing.  I worked on my painting commission the whole time they were gone, and it is finished now!  I'm really happy with it.

Jeff is no longer working his day job and is home with us now.  He is going to be working on his guitar school, getting more students and growing the business.  This is such a good thing, because it is getting way too hot to be working such a physical job outdoors like he was doing.  Also, the kids are SO happy to have him at home more!

Loving on his dad :)

Receiving his yellow belt

Before Chilly's drop and roll!

Arley staring down his horse Zane

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