669 + 565 Weeks

I'm trying to think if I have any news for this week, and I'm not so sure that I do.  Nothing major, anyway.  We had our family time on Friday morning - it was another hit, despite the rain.  We stayed indoors and played games, and remarkably there was no fighting!  We had a chill weekend, and I got a bit of painting done.  We had Taekwon Do on Tuesday, and somehow Arley got sick in the car on the way up, so he was unable to participate (and make amends for his terrible lesson of the week before!).  Carmie and I, on the other hand, had a really good lesson.  Then we went up to Mum's for some Lolo and Dida time.  On Tuesday night Arley had insomnia and woke us all up screaming the house down at 2am.  For some reason he was too scared to get out of bed.  That made Wednesday a bit of a mess for the two of us because we were both sleep deprived.  He did really well though - he went to Caloundra and had his session with Sprinkle, and then I had to take him for a dental appointment.  His teeth are looking SO good.  I can't believe the difference.  He still has quite a way to go though, as his back teeth don't meet up properly (they never did), so he doesn't chew well.  His teeth should all be done by the end of July, so it's not long now.  Carmie had her behaviour specialist come over this morning (Carmie loves her, you should hear their quirky conversations), and then she had a D&D session this afternoon.  She came back all smiles, so happy.  So, no big dramas this week, which is really nice.  We've been spending more time with the kids.  Carmie and I baked a cake together, and Arley likes to lie in bed with me and read.  I hope this continues!

Family game time

Carmie’s Battenberg cake :)

668 + 564 Weeks

It has been a good week.  One of our behaviour specialists came over last week and helped me set up a morning routine where I wake up early, get the kids' schedules organised for the day, and give them a list of everything that needs to be done by 9am.  Then I get to exercise and go on my morning walk while they complete their lists.  We took two days prepping them for it and helping them with their lists, then on  Monday they were on their own...and it's working!  Mornings have gone from an extremely stressful and frustrating time, to smooth and uncomplicated.  The kids are doing so well, and I am a lot less stressed each day.  Win win!

On Friday last week we had our first scheduled family time, which we are doing every Friday morning now.  We took the kids to Amaze World, which is an outdoor place with different mazes and puzzles to solve, as well as a mini golf course.  The morning was fun, with no drama!  Jeff and I couldn't believe it.  We let Arley have the downtime he needed with my phone while we played mini golf (I won).  We solved the mazes and failed some puzzles, and it was a complete success.

This week Arley had his worst Taekwon Do session ever.  It was just awful.  He hadn't slept great for two nights, and he was very belligerent, to both me and Mr Kelly.  There was lots of shouting, refusal, finger-pointing from Arley, and tears (from me!).  We eventually managed to get him to participate, but it wasn't easy.  Afterwards I took the kids to the movies because Lolo and Dida were busy, and we couldn't go home because we have just employed a cleaner (yay!!) who was doing a big clean on our house.  Before the movies I bought the kids ice cream.  They both got those rainbow sour strap candies on top, but sadly we forgot to check if they were gluten free.  We found out later that night (4am, actually), when Carmie was vomiting in her room and I had a mess to clean up!  The poor thing, she was really sick.  So we cancelled Clint the next day so Carmie could rest.  Arley still went down to Caloundra for his session with Sprinkle, which he enjoyed.

Thursday was ANZAC day here so all sessions were cancelled, except that Carmie went to a river cruise and a lunch with the team from her social groups.  Sadly it didn't go well either.  She was very uncomfortable and was on the verge of meltdown the whole time, so I had to go pick her up early.  I felt really bad for her, as she was very upset and disappointed with herself. Poor thing.  We are getting her help, but it is just not happening fast enough I think.

So, we've had a good week on the whole, with a few bad times and sicknesses mixed in.  I'll take it, because now I have my mornings back!

667 + 563 Weeks

This past weekend Jeffrey and I had an actual break!  Mum and Geoff had bought us a dinner out (Jeff’s birthday present) and given us an IOU in babysitting, so we took them up on their offer and house swapped for a night, leaving the kids at home with Lolo and Dida. Jeff and I went to an afternoon movie and then straight out to dinner up at Peregian Beach. It was great to be out on our own (although Arley gave me plenty of grief beforehand!). We had such a nice night. The next morning we woke up and only had ourselves to look after. We had breakfast out at Coolum Beach, and then we rode around on our unicycles for the morning, before heading back home. Going out to dinner is lovely, but having the next morning free too was the best. Mornings are my least favourite part of the day at the moment. So the respite was a huge help!

So yes, mornings have been tough for a while. It takes us about two hours to get the day started, and that’s with a lot of nagging and coercion. I’m over it!  I spoke with one of our behaviour specialists this morning and we’ve come up with a plan that I’m going to start implementing next week. My fingers are crossed and I’m really hopeful. 

We’ve had a bit of a quiet week. Carmie has been sick on and off. She is also taking a break from some of her teen social groups, but she has picked up another D&D group. She now goes to three of these a week. Arley tried to join in on the Monday group but ending up spending most of the time in the sensory room instead of being part of the group. He’s happy to continue going though. It might just take him several visits to warm up and feel comfortable playing with the other kids. Arley is still loving his one on one session with Sprinkle, and he has another guy, Alex, coming to our house every Friday after lunch to play with him. We have cancelled Clint on Friday mornings because we have decided that should be family time. We are going to do something fun with the kids every Friday morning, and we’re all looking forward to it. I’m sure it will get quite stressful, but we’re determined to struggle through the hard parts to get to the good parts!

I have barely any photos this week, again. On the way back from a doctor appointment, Carmie and I dropped in on our friends for a surprise visit. That’s where the photos come from this week. Me with baby Evie and Carmie with dog Teddy. :)

Jeff kicking butt at our 2nd Matrix Guitar Satueday morning jam session :)

666 + 562 Weeks

I have only one photo this week!  It is because the kids are getting older and are spending less and less time with us, and because Arley hates getting his photo taken and always makes a dumb face when I point my phone camera his way.  We have vowed to start going on outings with the kids again, at least once a month.  We are all so busy these days - Jeff and me with work, the kids with their therapies and social activities.  Jeffrey is not quite ready to accept the kids turning into teenagers and needing to be around us less.  I, on the other hand, feel less pressure than I have in years.

Things have been a little slower this week because Carmie has been sick with a sore throat and headache for the past three days.  I did take her out for morning tea on Saturday.  Whenever I discover a gluten free cafe, I make it a point to take her there.  Arley and Jeff were gaming together, so they had daddy/son time too.  The kids had OT on Monday, and they were the first good OT sessions the kids have had in ages, which is a big relief.  We did Taekwon Do on Tuesday too, then headed up to Lolo and Dida's for a few hours.  Arley went to his Wednesday session with his friend Sprinkle, and was picked up from home, and dropped off home too.  This was his first time doing something on his own, completely without me, and it felt very freeing!

I don't have much else to add, which I think is a good thing.  Barely any dramas this week!

664, 665 + 560, 561 Weeks

I completely forgot to write the blog last week!  It was days later before I realised.  I guess that's a reflection of my mental state!  Things have been pretty busy around here.  We survived Easter Sunday and Jeff's birthday all rolled into one day.  Arley always gets very dysregulated when things change up (like holidays), so this was a double whammy.  We started the day with a 9am Easter egg hunt.  This is the first year we didn't hide the eggs the night before and then get woken up at the crack of dawn on Easter morning.  It was so much better!  After the hunt we were done with Easter and we moved on to Jeff's 53rd birthday.  We had Mum & Geoff over for cake (really brownies, Jeff's fave) and hot cross buns, and we had a nice little family morning tea and Jeff opened presents.  In the afternoon Jeffrey and I went to Mooloolaba to ride our electric unicycles.  I did fall off mine, right on to my butt, but thankfully only Jeff saw, and I didn't hurt myself!  LOL

We have been busy with therapies etc as usual.  Arley now has a new 'mentor' - an 18 year old boy who comes over and plays computer games with him.  His name is Alex, and Arley loves his sessions with him.  Carmie is still attending her three social sessions a week, and apparently this isn't enough, because she is starting another Dungeons and Dragons group on Monday, and Arley is starting too!  Luckily I can utilise the pick up and drop off service this place has now, so I don't have to drive nearly as much.  I'm hoping Arley loves the group and no dramas happen.  I'm a little worried to be honest, but we have to try.

Carmie had her first sleepover on Easter Monday.  She spent the night at her friend Piper's house.  It was a great success, even though Carms was quite nervous.  Piper's three cats definitely helped!  Arley was so jealous - he kept insisting that he was going on the sleepover too, and kept asking, "When are we leaving?  What should I pack?" and other silly questions.  He was very ticked off, so Jeffrey and I took him out for ice cream and a movie that same night.  I think he felt quite grown up, and he didn't give Carmie as much grief as he would have when I brought her home the next day.

Carmie had her appointment with the cardiologist.  She got diagnosed with 'autonomic dysfunction' - because the cardiologist doesn't like to use the term POTS.  Basically her nervous system doesn't regulate her blood pressure very well when she goes from lying or sitting to standing up, and then it all gets worse when she exercises.  It's why she has been ill so much.  He also confirmed her hypermobility and said it's quite common for kids with hypotonia and hypermobility to have this autonomic dysfunction.  It won't go away, but we can improve her health in small steps so that eventually she will feel good again.  She has to drink 2 litres of water a day, eat three meals and three snacks, and start doing a few minutes of exercise here and there until she can build up some tolerance and strength again.  It's so good to finally get an answer, and have an action plan!  She has been coming for walks with me every day - she can only get to the end of the street, but next week I'm going to push her a little further.  Small steps!

We have had pretty rotten weather lately - so so so much rain.  We've just had a few lovely days, but apparently the rain is starting again tonight and will last until Monday.  I guess it's not too bad, we are such homebodies anyway.  We have everything we want here at home.  I'm even painting again!  But the rain has brought out the critters.  We were visited by a giant python one night - that was a little scary.  It was about 7ft long.  And this morning when I came in from my walk, there was a little critter in the hallway.  It looked like a cute rat, but it skittered down the length of the hallway and turned right into the back part of the house, and it was definitely hopping like a rabbit, so I think it's another antechinus (very cute Australian mammal), and it's living with us somewhere in our home.  I'm hoping Bella doesn't find it, it will be a bloodbath!

Our friendly neighbourhood python

Easter morning 

Birthday boy

My new painting

Carmie out on a Daddy daughter date :)

Clear fans of Lolo’s

I’m the only one who doesnt look like a doofus!

663 + 559 Weeks

It has been a big week, following a nice weekend.  On Thursday night last week, Arley and Carmie had a massive fight, instigated by Arley and continued by Arley.  He felt really bad the next day, so Clint took Arley to the mall for his Friday session, so that Arley could buy Carmie a present.  It made the world of difference to Carmie, and was a sweet thing for Arley to do.  On Saturday morning we had Lolo and Dida over for morning tea.  I had made ginger cookies and a cinnamon apple tea cake, both of which disappeared too quickly!  It was good to have my parents over.  The kids and I see them once a week, but we had missed out on Tuesday, so it was nice.  That afternoon Carmie went down to her social group in Caloundra, without Arley this time as he has given up on the joining the groups.  Instead he is doing a one-on-one session with Sprinkle every Wednesday, and that is going along smashingly, he loves it.

Jeff and I got in some unicycling on Sunday, and we had a sneaky lunch out without the kids.  We went to Rice Boi (remember the queues for this place, Dad and Colleen?).  It was really good.  Afterwards though we got caught in the rain on our unicycles, which definitely makes it less fun.

We had so many appointments this week.  Carmie had psychology, and she also saw her endocrinologist to get the results from her endoscopy.  While her coeliac markers are still high, she is looking good on the inside, with no active coeliac disease or inflammation in her digestive tract.  So that is great news.  However we were at the paediatrician today, still trying to figure out why Carmie is getting sick and dizzy all the time.  We now have a referral to see a cardiologist to get Carmie assessed for something called POTS.  It is never-ending.  Poor Carms.

I took Arley to the dentist on Wednesday.  He is doing really well with his Invisalign treatment.  Everything is on track to be finished around July/August.  They are still widening his mouth and there is a lot more teeth-moving that needs to be done, but his teeth are looking so much better!  Couldn't be happier :)

Carmie just got home from her dungeons and dragons session, all smiles.  She absolutely loves it, and has now started collecting D&D dice.  Tomorrow Arley has Clint in the morning, then a new support worker coming over in the afternoon to hang out and play with him at home.  If it goes well, this new guy, Alexander, will be a regular Friday afternoon activity for Arley.  Fingers crossed!

I think that's it.  Barely any photos from this week.  One of Carmie, and one of Clint changing the tyre on my car.  I forgot to mention that - on the way to the endocrinologist on Tuesday, I got a flat tyre.  So stressful!  Jeff had lessons, so Clint came and saved the day.  But that is my second flat tyre in a month since getting four new tyres.  How unlucky can I be!!

662 + 558 Weeks

This has been a week of overwhelm!  On Saturday morning we had our first open mic and jam session for Jeff's guitar school.  We were worried about the weather, as it was super windy, and we weren't sure who was going to rock up, but we ended up with a small group and we all fit into the alcove on our back patio, out of the wind.  It was a successful first jam session.  We are putting them on monthly as a bonus for the guitar students, so we are very happy this first one was a success.

On Monday morning I took Carmie in for her endoscopy.  She was pretty nervous, but handled it well.  There was quite a lot of waiting around, before and after.  They let me stay with her until she was asleep, and then she was done half an hour later.  She was very groggy, but told me she had just had the best sleep ever.  Haha.  Her endocrinologist said he couldn't see any active coeliac disease, but she had 'nodularity' in her oesophagus.  They took biopsies all the way down, and we'll get the results next week.  My hope is they can find out why she hasn't been well, but that it is an easy fix!

We cancelled Taekwon Do and going to Lolo and Dida's on Tuesday, as Carmie had a sore throat and the weather was torrential rain.  I also needed a day to recover from the stress of the day before.  On Wednesday the kids went to Clint at Chambers Island, and then our support worker took Arley down to Caloundra for a new one-on-one social group with Carmie's friend Sprinkle.  It is exactly what he needs.  He adores Sprinkle, and she likes him too, and because it's just the two of them, he gets all the attention, which is what he needs for his confidence.  In a group setting, as soon as he is trying hard to fit in and they don't notice him, he gets really upset and gives up. So, we finally have a 'group' for him that he enjoys!  He'll be hanging out with Sprinkle every week, and he's stoked.

I think that's all the news from this week.  I'm glad it's almost the weekend!  My exhaustion is real!

Waiting for her procedure 

Chowing down at her favourite place, the gluten free bakery

My Bear

Matrix Guitar School Jam Session :)