534 + 430 Weeks

I'm trying to think back to what we did this week, and it seems like we didn't do much at all, except for doctor's appointments and therapies.  Not much fun in that!  Although Arley is loving this therapy he is doing once a week here at the house.  It's called Launchpod and his mentor comes to the house and plays with him doing science-y stuff for two hours. They've signed him on for a six month contract, so it's great.  I just had Carmie's first meeting for her NDIS funding on Tuesday, so we should find out what kind of supports she is getting in a few weeks.  Hopefully we'll be starting up horse riding again, and Carmie can do Launchpod too.  They are also trying to put into her NDIS budget funding for us to get a carer to come take the kids out once a week.  I'm so thankful for NDIS, it really helps.

I took Carmie to the dietician on Tuesday to get help with her diet and have a chat about our family's diet as a whole.  It's pretty stressful knowing this is her life from now on, but she seems to be accepting of it.  I also had to go to the doctor again to get referrals for the kids to see a paediatrician here, because we have to transfer care from our old paed.  I dropped off the referrals today and made appointments, but we can't get in until May, and its $480 per kid!  OMG!  We will get $230 back on Medicare, but doesn't that seem outrageous?  In the meantime I'll be doing Telehealth appointments with their Coffs paediatrician.  I had one on Tuesday because we are trialling Arley on Ritalin again, starting tomorrow.  Keep your fingers crossed!

The weather has been up and down, hot one day, cool the next, and today has been rainy so we took the kids to the mall.  Jeffrey has been working.  He's not loving the new job - it is long hours of labour with no lunch break, so not great!  And it's only getting hotter.  He has to wear long chainsaw protection pants and longs sleeves, so I don't know how he's going to handle it.  Monday is going to be 33 degrees. :(

We went for a few walks and park plays this week.  I got the kids out feeding the swans on the lake (these are our only photos from this week), and we got up to the park.  I am trying to get Arley back on his bike, but his anxiety is sky high.  He hasn't ridden for over a year, and it's pretty much like he's learning to ride a two wheeler all over again.  Carmie hopped on her bike yesterday and promptly crashed, so that didn't help!

Not much else to say!  I have taken the week off working on Instagram for my business, as the harassment continues.  In the meantime I have been working on an NFT project with Georgia.  Check out www.theslothlounge.com to see what it's all about.

533 + 429 Weeks

I have barely any photos from this week, as my mind has been engaged with lots of drama over my business and 'cancel culture'.  There is a lot going on, I am being publicly denounced.  But I am surviving!

Things have been good.  Carmie has had a few nights of insomnia but seems to be handling her new diet pretty well.  We saw our friends Nicky and Lexi and Felix on Friday, and it wasn't the most successful outing because Carmie was out of sorts.  She was recovering form her sickness last week and hadn't slept. I have to teach her how to remove herself from social situations in a calm way. Arley had fun playing with Lexi on his own, so that's a plus.  Yesterday we met them at the big mall here so the kids could go off on their own while Nicky and I sat with Felix and let them roam free.  They were looking forward to their first mall expedition without being followed around by parents, and it was a success.  Carmie can't wait to do it again, so we're giving it another go at the smaller mall after the school holidays.

We haven't really been out much because of the school holidays.  We don't like crowds, so we tend to hibernate when kids aren't at school.  Some good news is that Jeffrey got a job as grounds crew for a tree lopper.  He loves that kind of work, and today was his first day.  It will be three to five days a week, and he's stoked.

We had a parents' session with our therapist this week, instead of a family session, and it was enlightening. She said Arley is obviously very smart but she recommends him going back on Ritalin - on a smaller dose but on long-acting instead of short-acting this time.  She said one of the hardest things to do is to teach an ADHD kid.  I'd have to agree!  She also gave us a method to use when he is angry or upset etc, and I think it is going to work.  It is simple and based off of the therapies we have been doing for the last month.

We have also signed Arley up for something called Launchpod.  They're a small local company that matches Arley up with a mentor, and they come to our house and play with him with STEM toys while helping him with his therapy goals.  He had his first session this morning, and it was awesome.  He loved it.  I was listening in, and Arley was engaged and listening and enjoying it for the entire two hours.  So, he will be doing this for two hours a week for the next six months, and I couldn't be happier about it.

We have been trying to go on bike rides and scooter rides, but we keep getting attacked by swooping magpies.  I was actually hit in the face!  Arley was attacked from behind.  Luckily we were wearing helmets, but oh my goodness those birds are scary sometimes!  Jeff had to pick Arley up in the car on one attempt because he was too scared to get home!  Hopefully the magpie swooping season passes quickly.

I don't think I have much more to add.  Wish me luck getting through this cancel culture attack.  I'll update again next week!

Oh, and we got hair cuts this week!

532 + 428 Weeks

We have done quite a lot this week, despite the fact that Carmie was sick for three days.  She had a really bad sore throat, but no other symptoms.  She also slept badly for those nights, I'm assuming because of her throat, so she wasn't doing very well at all.  She started to recover yesterday, and today she was right as rain, so we met some homeschoolers at an indoor play centre, and the kids had a BLAST.  Luckily it wasn't busy at all, and all the kids got along and played together really well.  We ended up staying for three hours, which is a really long time for my two.  Afterwards we dropped Arley at home and Carmie and I went to the mall (she is constantly wanting to go shopping for fidget toys!).  So, I am fairly exhausted right now!

Yesterday I took the kids to the library.  Carmie borrowed 25 books, and she was so excited to be back at a library.  Arley borrowed five and didn't seem terribly excited at all!  Haha.

On Friday last week we met Lexi and fam at a place called Rush Adventureland, and the kids loved it.  There was an indoor play area, rock climbing walls, these strange bumper cars, and a 'roller coaster' which is a contraption that hangs the kids from the ceiling and they can 'fly'.  They had so much fun.  We can't go there too often, because it was pricey, but every once in a while it will be well worth it, I think.

On Saturday Lexi and fam came over to our place and then we went for a short walk to the nearby skate park so that the kids could have a scoot and a skateboard.  Arley refused to come.  He refused to participate at all or even come out of his room when they were over because right in the first five minutes Lexi asked to go to Carmie's room and not his, and that was the end of the world for him.  He gets very jealous when kids want to play with Carmie instead of him, and he is hyper-sensitive to everything, even when his friends have no idea why.  It is very frustrating.  After the skate park they all came back to our place to have a go on the VR, and he still wouldn't join in.  Everyone else had a good time though, so at least there's that!

On Sunday I took the kids to the smaller mall, because they wanted the gluten free donuts we found there. At some point I'm going to have to put my foot down with all these mall trips.  They love fidget toys, and they buy them with their pocket money, play with them, and then trade them with friends.  It's great because it gives them a way of connecting with each other as well as other kids, but their desire for them seems insatiable!

So, quite a good week all in all!

Videos from Rush Adventureland:

https://www.youtube.com/watch?v=VLW52kf--gQ

https://www.youtube.com/watch?v=KAyPp9DVQi0

Carmie and Lexi

531 + 427 Weeks

This week has been less busy as far as kids activities go, but more busy as far as work goes, so I still feel thoroughly burnt out!  We have made it through one week of gluten-free meals for Carmie (and me) with success.  It takes a lot of effort and thought, but we will get there.  We even went out to eat one day.  It was Father's Day on Sunday, and after a Carmie-made breakfast, Jeff decided he wanted to go up to Coolum Beach.  We took the kids to the skate park up there, but it was a little too busy for Arley's liking.  He was convinced he was going to get hit by some guys on their skateboards.  Carmie had fun scooting around and playing in the skate bowl.  I took Arley to the park and tree climbing.  Afterwards we wanted to find somewhere to eat, and after a little walking we managed to find somewhere that could cater to Carmie.  Arley was ticked off because they didn't have soda there, and he wanted some (he is allowed it as a treat when we go out), so he was a little difficult.  I ended up leaving lunch early and taking him up to the nearby video arcade where Jeff and Carmie met us later on.  It was a successful trip out but I was absolutely exhausted afterwards.  It takes all my energy to scaffold for the kids.  I think Jeff had a nice Father's Day though.

On Monday we went to a new park to meet a homeschooling mother and daughter who we hadn't met before, and the kids made a new friend.  Her name is Lily.  They played with the fidget toys that they had brought, and had a play at the park, and it was a good two hours of successful play.  I'm so glad there are kids here for Carmie and Arley to play with!

On Tuesday we met Nicky and kids down at the beach again.  Arley was a little painful because Lexi kept telling him he had to go last because he was the youngest.  Of course Arley wasn't having that, so instead he just got mean.  Little bugger.  I took the kids to get ice cream though, so that earned big smiles.  After the beach play, Lexi asked if Carmie could go over to her place for a play, and I said yes.  Just the day before Carmie had been asking me if she could have a play date without Arley some time.  Of course she can, it just never happens that way.  So, I said yes, knowing that Arley would be devastated, and devastated he was.  He thinks of Lexi as his friend too, so he didn't understand.  My heart broke for him, but he has to get used to Carmie going places without him.  I took him and got him a bottle of Fanta and he was happy again.  I have found a friend for him - a little 8 year old boy who lives in Sippy Downs near us, who is starting homeschooling next week.  I'm hoping they get along, because that would be perfect.

I don't have much else to say.  My head is all about work lately, and these weeks are flying by.

A package of gluten free treats arrived from Auntie Georgia.  Made Carmie's week!

And another!

Father's Day

Arley refusing to smile again :(

Ice creams!

Still not smiling

530 + 426 Weeks

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!

Play at Mooloolaba with friends

Last gluten treat ever

At King's Beach sea pool

Swans coming to visit me on my morning walk

Arley does it again

Park play