Girl Trip

Lili, Fei, Jia and I are doing a girls trip.  So fun!  The older two are missing out on our road trip, they just can't take the time off.  Fei only has one week off between school and clinical days. Lucky us, the days worked out for a very economical wee trip. 

So many hotels to pick from. Bally's regular rooms were $18 through the flight/hotel package.  So we went nuts and upgraded to a Jubilee room with a view of the strip for $30.  We have zero idea what a Jubilee room is but it sounds good.

The average temp for our week is 31.  I'm working on trying to get Jia to understand that shorts and t-shirts will really be better than her suits and ties ;)

While searching hotels we found one where you can swim with sharks. Tank and pool beside each other.  We ultimately didn't pick this hotel and opted for more creature comforts on the strip but it is an option to go pay to swim with sharks. So this is definitely the top of our wish list!  Along with seeing the Grand Canyon and the Freemont zip line for the girls.  

I originally booked the trip for Lili, Fei and I. Jia heard girl trip, assumed she was going too and heard there might be swimming with sharks.  So this morning I tried booking her a flight but couldn't get a child a lone ticket. Then I tried adding her to our itinerary and finally gave up, canceled it and started over.  Funny thing, it was at $298 each but then went to $242 each.  Flights went down over night!  

Overwhelming

Cute moments just happen all around us while the world falls apart.  I'm personally just feeling panicked a lot of the time.

A friend posted a list of morning chores over an hour period.  Hugs.  But I read the list and thought if she had broken her list items down that her 13 tasks was likely a LOT more.  So today I was trying to be conscious of the number of things I do in a day.  I am very aware that I do way too much for the kids.  However for me, I just want WAY less talking so I realize I will do things for them just to avoid more talking.  Our big hour of too many chores is actually the medical, bedtime routine.  Morning has become pleasant and peaceful now that Jia sleeps in.  She doesn't start her school work until 1.  

Jia and Mom continue to work well together but Jia is in a spiral right now so there have been two days of Jia crazy.  Mom is new to this part.  It's almost funny to watch.  Welcome to my world.  Jia isn't crazy or angry or arguing, she just can't get her mind slowed down enough to focus.  She is extremely distracted. I know the trigger is a wig that arrived for one of her cosplays and she is hyper focused.  It's extremely difficult to break a hyper focus and sometimes when you break it, she moves right onto another hyper focus.  Sometimes there is time between them and we get to see her deal better.  We are happy she's home for school, it was a good decision, she is doing way better out of that environment.  

Luk still has pain.  Poor kid.  He is over all glad he has his cecostomy.  Some parts of this are definitely working for him. We are fine tuning the procedure so it's not quite as daunting.

I'm super angry about the new war.  Sad and broken for the individual stories.  Hearing that mothers are writing kids names and blood types in their clothes.  Arg.  Brutal. The news is so hard to watch. Yet, still feeling compelled to keep up.

Another friend let me know that when she was out for coffee the table next to her was discussing that Justin owns the aids virus and has vaccinated us all with it and most of Canada will be dead in two years.  Sigh.  I asked how she kept a straight face.  So, how does society ever actually return to normal?

Caulking next. So close.  We have the toilet back in use!

We got to escape yesterday afternoon for a thrift store shop and a bakery treat.  Finally got the cheesecake I was jealous to miss out on for Fei's birthday.  Eric picked 10 new dvds for our road trip and a pillow to support his arm on the drive.  It's feeling a bit real that we get a road trip in 21 days! Can't wait.

A few days late but the kitchen Gods finally got their honey lips and Jia took them out to burn.  She wanted to try using a lighter.  Haha.  Life skills one by one.  

How does Bathfitter do it in one day?

So many steps.  The weekend was mudding, drying, sanding and painting with all the drying in-between the steps and coats.  Today the three flat panels are glued up. Corners tomorrow?  As always.  Seriously more involved than I thought.

Broken tooth.

Albi dropped by on Family Day to surprise the kids.  Gelato for dinner!  We woke up to a skiff of snow and yet the ice cream truck is out and about.  Wild.

I broke a tooth on Friday.  I just called for an appointment and they offered me one in an hour.  I said that was a bit quick, anything else available? And big attitude came back.  Seriously, she totally expected me to drop what I was doing and get in there. Which was great except I'd already told her it wasn't an emergency.  Sheesh.  We're all on edge but can't we all at least try to be less bi!@hy.  

Jia is on a countdown to the road trip.  Love it.  Lili is on reading break.  This is the week we were supposed to be on our cruise.  Lili and Fei are currently checking their schedules to see if there is a few days between Fei's term and clinic.  They're wanting a girls trip to anywhere.  Pretty sure they're feeling like they're missing out on the road trip. I've been having fun scouting some ideas for them the end of April.

Children's called.  Luk's appliance replacement was scheduled for a Disneyland day, of course.  Now tentatively rescheduled for the Tuesday after we come home.  We were planning to arrive home on a Sunday.  Now Im waiting for date confirmation and info on if the procedure is sedated or not.

Darned Protesters.

Arg. Arg.  Grrr.  

Lili, Jia and I took off today to hit Victoria. Jia is looking for pieces for her next cosplay outfit and I wanted to find Spiderman shirts for Eric and Luk. Kai already has one. Lili was along for the ride and lunch in Chinatown.

 The covidiots were out and we came upon their line up.  It looked small so we carried on. By the time we made it to Mill Bay it was clear they were slowing things down significantly.  Doing 60.  Zero chances to pass anyone.  Totally crippled the highway. I have so many foul things to say about the selfishness of a few.  They definitely don't represent my Canada. When we got to the top of the Malahat they were pulled over, gathering and had a GIANT rope out. It looked seriously like they were getting ready to block the road. We called Eric to ask if they had been doing that.  He thought it was quite likely they might as things escalate and thought we should turn back.  Lili thought better safe than sorry. We were able to turn back at the Malahat Chalet. Eric called the rcmp who told him there were two accidents on the Malahat and it was likely to be shut down anyways.  I have no clue if it really was or not. There was an accident back in Duncan so we ended up back roading our way in.  What a day. So frustrating.

We went to the Mongrillian but they were closed. So we ate lunch at the Oak Taphouse. Which was nice. Then to Walmart where I found a Spider-Man shirt for Eric and knee high socks for Jia.  Then to a couple thrift stores to find beige shorts to complete Jia's new look.

Here she is as Sunny from OMORI.  We thought the shoes would be the hard part to find but I culled out my cubby today and I already had mary-janes she can wear.  Bonus, they're super comfy so they might be suitable for Disney.

Displaying her love of games, art and fashion all at once.  She's planning to have this look on at Disney ;)

Lili and I made it out last night to see Marry Me. Totally predictable but I liked it anyway. 

Lili has headed out to dinner with a friend.  I ordered pizza from Door Dash.  Our first time using Door Dash from the house.  It was super easy, this could become a bad habit.

Eric worked all day on the shower project. The walls are cut. I think next step is figuring out edging and painting the ceiling. As always it was considerably more involved that I anticipated.

Victory!

Kai is on the couch!  Still not sitting but possibly the boycot is over?

Even better snuggled under Gramma blankies. Sasha wants in all that coziness.

The old ugly shower wall is leaking.  We would have preferred redoing the whole room but we're out of time and we need the bathroom functional. So just the tub wall for now.  At this point we're fearful of ripping this down.  We're anticipating mold and a disastrous clean up and rebuild.

Oy.

Look!!  No mold!! Funky old boards. There used to be a low sink there.  Old houses have so many mysteries.  

We went to Home Depot and got the walls. 

School is in session.  

General Thoughts

The fancy new doggo ramp arrived. So far we're decently pleased. Less chance of Finn falling, room for them to pass each other and it doesn't move around needing adjustments if Isabel touches it.  

Isabel's issues are happening more and more.  I hate watching her get old.  

Four out of five here are super excited about the road trip.  I asked Jia today if she'd rather fly, she said no way, I want the cinnamon buns!  Haha.  A plate size bun that's worth a three day drive.  

I told Eric that I feel pressure picking out hotels.  So he did it. Might be the first time he's looked online for a hotel.  He picked the Eden Roc.  We've stayed there three times before.  I love it. 

Jia's parrot.  Oh Walter. 

The boys have a four day weekend. Luk needs the break, he's exhausted. Jia still has school tomorrow.  Gramma has taken over with her and they seem to be working well together.  We're seeing her more engaged in learning so that's interesting to watch.

Luk's new regime is working. He's starting to see the areas of his world that will be improved.  We still have a few supply issues. I'm already trying to stock pile for the trip.  We're going to attempt making our own saline at home so we can pack the shelf stable bottles with us. 

Luk needs his permanent appliance put in just about the time we leave for our spring  break road trip. Oops.  No dates yet.

Jessica, our pet/house sitter came today to meet Finn and see how to get his meds in. She was smitten :) she says he's insta worthy.  Love it.  

Fei's car was having gaskets replaced and then her radiator too. Hefty bill.  Happy Birthday Fei.  It was ready this afternoon.  Lili is coming home this weekend and it would leave Fei in Nanaimo with no car so we whipped it up to her. Grabbed the big girls and had Taco Bell then dropped them back home. It was a whirlwind visit.

We drove past the bleeping pretty moho again, I tried not to look. We went back again on Monday and I think we've pretty much decided it's the right engine, transmission, generator, has great under storage, the dash and doodads are great but the coach part needs a lot to get it where ours is.  We just don't need more projects. So today it's a no.

We're planning to see friends this weekend.  In person!!  

Road Trip!!!!

We just booked Jessica (house/pet sitter) to come here for 10 nights.  Sooo excited.  We don't have a plan in place yet.

On the table is Disney of course OR Reno/Tahoe/Virginia City with another Truckee River train trip OR Radium, Dinasour museum and finally to see the damn hoodoos that we've never seen.  Luk and Eric flat out don't want to fly.  We're still unsure of flying with all of Luk's supplies anyways.

Update.  I booked Disney tickets and reservations, no shock there.  Bulldozed my way to what I preferred.  Haha.  Kidding, but not.  When I looked last night both parks were available on the days I preferred.  Today it was limited to one park available so I panicked and made the decision, Eric gave me the go ahead.

Sooooo excited to take the boys.  Ok, well, super excited to take them and a tad apprehensive about Luk's medical needs and Kai's oddness and visual impairment.  It will all be fine.  Just fine.  Totally fine.  Luk is thrilled.  Eric said he wasn't sure if Kai even heard him.  Jia is excited about getting a bonus trip and already wrangling to have Max come with us. 

Fei is 19!!

You'd think we'd get used to them growing up so fast.  Nope.  How can yitto baby sisser mei mei Fei Fei be 19 already?!

Gramma babysat the kids so we could take her out for a pub dinner.

Her 1st 'legal' adult beverage. 

We ordered 6 appies and shared them all.  The food was all really good.

There were pull tabs involved!

We put 20 in, won 3, then played them out.  They were fun for a hot minute.

We had a nice time. Then home early for Luk and his schedule.  We brought cheesecake to the girls.  We're home now and I'm definitely jealous and wondering why the heck we didn't buy some for ourselves!  

Happy Birthday Fei!!  Thanks for sharing your milestone birthday with us.  

Kai's Family Day Celebration

This is from the day we met. Luk and Kai together for the 1st time.  They were both a tad more interested in the snacks than each other ;) How stinkin' cute were they?!

A few days after he moved in here.

Kai today.  He's still rebelling about his new couch.  Haha.  He's definitely put Eric and I through some parenting hurdles and challenges.  He makes us laugh every day too.  Such a silly boy.  He was pretty excited today that he got a donut at school.  Then super excited to hear that we were having pink pancakes with strawberries for dinner.

Luk set the table with pink napkins, red and pink cut out hearts and candy hearts.  I forgot to take a picture.    

Laugh with me.

Do ya'll remember the Commander motorhome I was infatuated with last summer?  We went to Parksville 4 times to see it.  We went over and over it.  We just weren't ready to trade ours in with a big upcharge.

I've been really good and haven't been looking at all.  Totally settled into our moho.  

Eric sent me a link today of a moho on a local lot.  It's a sunny day.  He was trying to talk me into going just to look.  Seemed like too big a hassle.  I told him I wouldn't like it based on the pictures blah blah blah.  Then he offered dumplings from Pings so I got myself and the boys out the door.  It is nice and sunny out.  

We got to the lot and the one online that we were here to see sold a month ago. I spotted a Commander down the row so we went to look.  Darned if it isn't the SAME exact unit. Priced 20 thousand higher.  Is this a sign?  

I checked the lot weekly and was sad when it was no longer listed.  Too funny to find it again by accident.  It was on consignment in Parksville. The same items are inside it now so we're guessing it's on consignment again.  

It is the right engine and transmission.  It ticks most of the boxes.  It's super pretty. However it only has two seat belts and only sleeps two. Definitely keeping my mind busy again though. Also, the dumplings were worth the outing :)

Flush

We made it through.  Lots of potty poop humor.  The amazing part is that it works!! Beautifully.  This will be life changing for Luk.  It did take all three of us over an hour. We'll fine tune some of it next time.

Uh Oh.

I ordered a washable couch for the boys to share.  I wanted Luk's green washable chair back in thriving room since he's joining us in there more often.  I thought this plan would open the walk through area and the boys could sit together. I was also hopeful we could get Kai to 'sit' without couch arms. Except Kai is boycotting the new couch.  He hates this idea. A lot.  

Kai has since the day he arrived been unable to sit.  He lays, lounges, slumps and flops. It isn't uncommon for him to slip, roll, flop onto the floor by accident.  We finally at age 10 allowed him to sit on a couch.  He has taken it to crazy levels of course. Crazy enough I needed the couch to leave the house. The couch was more of a Kai playground. We'll see how this pans out in the next while.

Eric reports that it's decently ok to sit on.  I sat for a while.  Luk doesn't hate it.  So at this point Kai is grieving his plush playground and he hates all change.  

Eric hit the pharmacies today and found one bottle of medicinal glycerin, 7 days worth.  We can order more on Amazon.  Luk was back to school today.  He's grumpy this afternoon.  Then I forced him to do the new stretching exercises.  Fun.  Tonight we're planning to attempt a real flush on Luk.  We're all a bit scared.  

Jia's Art

Maple from Your Turn To Die.

Same

Maple again.  No head.  I don't get it.

Rio Ranger, same game.

Midori. Her favorite.

She used ibis paint X.

She worked hours on these. The Pediatrician today was quite taken with her art. His kids are the same age.  He didn't believe she did them herself so she showed him the app and how to use it.  He stared at me intently, bit of awe and shock, then said "don't restrict her screen time". Skills.

Day 2

Up at 6. Easy parking today. Clinic at 8am. 

These two never see Starbucks so they were actually excited for their lunch today.  Cake pops included :)

8 appointments for Luk today. He is healthy. We have much to be thankful for. However. We were handed a LOT to deal with today. The daily medical regime for Luk is going to four plus hours a day.  To say I'm overwhelmed is an understatement.  His cord is tethering.  Too tight.  The orthopedic surgeon wants to get ahead of problems before the next growth spurt and he ends up in the chair full time. Then the urodynamics was done under ultrasound so we could see the issues. The issues are different than we all thought. His meds are now stopped and we're off on a new plan. That none of us like. Luk accepted that he'll be cathing. He accepted where he will be cathing from grudgingly.  Finally he accepted he needs a circumcision.  But folks, I'm certain once he KNOWS what that is we'll have a problem here.  He was extremely dramatic today. He is medically done. We need a magical moment for that talk.

We're supposed to start proper flushing tomorrow but first we need to locate medicinal glycerin.  That should be fun in Duncan.

The team today wants to get us home support. They think my plate is too full. They pushed and I pushed back.  We don't want  strangers here. It's always easier to do things ourselves.  I've come home and dumped all the info on Eric.  He's overwhelmed now too. I agreed to think about it and we will revisit the idea in four months when we're at the next clinic. 

Children's Again

We're back. Seeing the surgeon today. He looks great.  Cleared for back to school and ready to use the cecostomy. Then a meeting with our ostomy nurse.  Sarah. She's great.  I think we sort of know what we're doing.  

Jia came with us to enjoy the food and hotel.  Her and Luk get along well when it's just the two of them. Mom came for the ride.  We dropped her and Poppy with cousin Linda.

I let them loose in Dollarama for hotel snacks :) That was fun to watch.

Jia's ok with the trip so far.  We can predict that she'll be less than thrilled tomorrow with getting up at 6am.  Then she gets to see Luk's four hour spinal cord injury clinic.  8 appointments.  It's exhausting.  I've already promised Starbucks for lunch.  Then we're back to the clinic we were at today for urodynamics at 1. The kids asked today what that is.  Now they're both freaked out. Catheter into his bladder to measure how much liquid his bladder holds.  So that we can get the medication correct.  Cracking jokes wasn't the correct tactic.  One minute at a time.  Luk hasn't had this test since he was four.  He clearly no longer remembers it.

The drive here was ok but parking was a total gong show.  We circled for 20 minutes. The placard helped. We had to park at the front and it was open again!!  We were allowed with other people in the elevator. There were teenage volunteers here again.  Can't wait for the world to open up again.