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Many Hellos, One Goodbye

It’s hard to believe that we’re already three weeks into summer break. We’ve packed the month of July with visitors, which is a rarity around here! Right off the bat, we were lucky enough to host the Fales all the way from New Zealand. Andrea and I were best friends all the way back in High School – wow. Our families meshed beautifully, and though they were only here for two days, we packed in a lot of visiting during that time. Liam and Theo were buds right from the start, and continue to message each other back and forth. They are a lovely family and we wished they could have stayed longer! They are heading out to Ontario and back to Comox (LOTS of driving!) visiting friends and family along the way. What an adventure.

The day after the Fales left, Liam boarded a plane to Ontario to go to Camp Olympia with Grama and Grampa. What a lucky guy. He spent the week playing soccer, loving camp life and playing something called Gaga Ball. ?? He’s so fortunate to have the opportunity not only to go to camp, but to spend quality time with his grandparents and cousins.

Liam returned on July 13 with Aunt Pubba, Uncle Lipper and Jared. They haven’t been out West in quite a while (years, actually) and it was so great to spend time with them. The boys got some fishing in, though they didn’t actually catch much. We had some BBQs with Uncle Sean, Julia and Leafy, and lots of laughs as well. I think Paula and Seth spent most of the week cooking and cleaning, but they didn’t seem to mind. Seth also did a whole bunch of home improvements – minor repairs, etc. and even managed to work out a door screen thing to stop Lola from putting herself through the French doors in the playroom. They also worked hard on the garden, moving plants around, weeding, and putting down mulch. Wow! The place is looking great. We were choked to see them go – always the hardest part.

Part-way through the Lippers’ visit, Liam and Steve packed up the truck and headed to Silverstar for the first of the races that Steve puts on. Liam was in charge of selling raffle tickets, and this year he sold out! All 300 tickets! Last year, we used the money to pay for music therapy at lola’s school, but this year her music therapy is paid for (new school). We are considering setting up a disability trust to pay for Lola’s care in the future. Not quite sure yet. Liam is very proud of himself. What a guy. So the first race was a huge success and Steve’s pretty relieved as his numbers initially were down. So much work goes into putting on these events – it’s so great to see them be such a success.

This week, Lola and I are heading down to Golden, BC to Kicking Horse Mountain Resort to the Western Open (Race 2). We’re looking forward to getting away, though I’m a bit nervous as Lola’s always a bit of a wildcard. It’s tricky because we’re staying with others who are part of Team Lola (aka photographer, videographer, emcee, etc.) who may actually like to sleep past six am. I am so excited to seeing the boys, as we haven’t been together as a family for most of July and it feels weird.

Inset_RileySadly, this summer also found us saying goodbye to our beloved dog, Riley. The past month or so, his health was dwindling, and his overall enjoyment of life just wasn’t there. He couldn’t walk past the mailbox, and slept or coughed most of the time. Steve took him to several vet visits, as they tried a bunch of different medications to control his heart failure. Sadly, Riley died on July 9, and we are devastated. There was no better dog than our Riley. The house feels so empty. So quiet. We know that Grampa Ed was happy to see him up there.

In Lola news, we just visited the neurologist yesterday and are starting a new medication called Perampanel.  Sigh. Med changes suck. Poor old Lolly’s been through the ringer during May and  June – adding this, removing that. It’s all brutal. Chasing the dragon – or whatever. Anyway, we’re giving this med a shot. Our neuro said this was our “last shot” med wise, which I don’t really believe to be true (though I know what he’s saying).  I replied, “In this country.” He looked at me sideways and nervously said, “Yes, in this country.” I said, “Maybe I’ll have to move to Colorado to get the good stuff.” It was funny because once I opened the conversation up, he was very forthcoming with his opinion. I value his judgment, and it was interesting to get the big picture where all this hype is concerned. He’s got a valid point that some kids have a great reaction to CBD/medicinal marijuana, etc. – but some don’t. Just like everything else we’ve tried. Some kids are seizure free on the ketogenic diet. Some aren’t. I asked about Epidiolex trials at Sick kids, and he confirmed that he’d heard they were likely going ahead with their trial. I asked how long it would mean for the average person (aka us) to get their hands on the drug. He said if the trial was successful, it could be six months. That’s not so bad. Anyway, yeah. Shitty. Doing our best to stay positive and keep Lola’s best interests at heart….always.

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