672 + 568 Weeks

It has been a bit of a crap week, at least for Carmie.  I mentioned last week that Carmie was sick on Thursday.  She was so sick, all the way through to Saturday morning.  She could not keep a thing down, not even water from ice chips.  It was awful.  She slept with me while Jeff slept in her bed. She's already so skinny, and she got hit hard.  If it had kept going I was going to take her to the hospital on Saturday, but she woke up and was able to keep some custard down, and then she got progressively better as the day went on.  I lost count of how many times she threw up.  Thank God she improved, and she's been feeling much better since then.

Luckily no one else in the family got sick.  On Friday morning while I was caring for Carmie, Jeff took Arley to the aquarium.  Arley loves it there.  They had some father-son time, and came back all smiles.  We haven't done much else though.  Carmie was too weak, and I have bursitis in my hip, so I'm trying to rest as much as possible.  We didn't go to Taekwon Do on Tuesday, or up to Lolo and Dida's.  The kids have done all their therapies and social groups though.  

I have been busy doing the yearly registration reports for the kids' homeschooling.  I have to provide work samples and write a year in review, as well as an education plan for next year, for each kid.  It is rotten work and I hate it.  Carmie has been madly catching up on her writing so I can give a sample for Language Arts.  And getting Arley to do the required homework was absolute hell!  I will be so glad when I hand the reports in!

I have not much else to say except that I cannot wait for this week to be over!

Sweet Carmie when she finally was able to get out of bed and eat some custard

Father-son aquarium fun 

670, 671 + 566, 567 Weeks

I skipped writing the blog last week because I ran out of time, and now I'm so frazzled I can barely think straight.  Carmie has been sick for most of the day and she's just thrown up for the third time.  She is very pale and shaky and can't keep food or drink down.  I've had Chayse here this afternoon because I help him with his homeschooling every Thursday.  Arley has been quite a match for my patience today as well, and we had a behaviour therapist here for half the morning.  We are working on making some behaviour changes in our household, with the culmination (hopefully) being less screen time for the kids, and more independence as well as productivity, and hopefully happiness for all of us.  These won't be fast changes but we are in it for the long haul.

It was Mother's Day on Sunday.  Mum and I decided to boycott Mother's Day, as we realised that it was too much mental load for us when all we really want is no mental load!  We decided no special lunches or morning teas or anything.  Jeff cooked me breakfast and I had a nice day, except for the morning when Arley lost the plot for an hour or so.  Poor bugger, it was pretty awful for both of us.  But once that was done, my day was quite relaxing and pleasant.  

I'm trying to think what else has been going on over the last two weeks.  We have had plenty of therapy appointments.  Arley's behaviour therapist came over at 8:30am yesterday to watch how things go down in the mornings.  I'm sure it was enlightening for him.  Ha ha.  Arley refused to do Taekwon Do last week, but we got him there this week and he kicked butt.  Clint took him fishing for a little while on Wednesday and they caught five fish (thank God!).  Carmie started a new social group on Wednesday afternoons, and she loves it.  Basically some teens getting together and playing board games.  D&D is still her favourite though.

I've been quite arty over the last two weeks.  One day I went to Brisbane to go to the Affordable Art Fair.  My friend Kate was exhibiting, and I wanted to go down to see her, and see the work on display, because I think I'm going to exhibit there with her next year.  This past Saturday I went to a painting workshop and that was really great.  I learnt new techniques and had some quality me time.  And I also finished the painting I have been working on.  All of the kids' therapists have been talking to me (for years) about getting in some time for myself so that I don't suffer burn out, and I'm finally able to do that sometimes, and I realise how much I need it!  I am also getting up early every morning and spending an hour having a cup of tea and getting set up for the day, and it is doing so much for my mental health.

I'm sure there are a million things that I have forgotten to mention, but so be it.  I don't have any photos of the kids either!

Kate and I

Magnolia still life from the workshop

My new still life :)

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!