It’s been suggested we keep the blog going as well as the facebook page, since a lot of people won’t follow the Facebook stuff, so I’m going to try and put up the longer updates and such here.
First, a huge thanks to everybody who has given us support. Maybe we should have set up a Facebook page a while ago (see Alex’s story on Facebook if you haven’t already), because the support there is tremendous, and it’s a bit easier to respond to folks there than on this blog. It also is much rarer for Facebook to crash compared to the server running the blog. Anyway, thanks so much – the support we’ve gotten has been HUGE.
Here are some highlights:
- We’re getting new high-CBD clones tomorrow which should make for much more effective medicine for Alex
- We’re going to be giving RSO (Rick Simpson Oil) another shot, as somebody locally is offering us a donation
- Our facebook page has nearly 2300 “likes”, and so far I believe I’ve seen only one person suggest that cannabis might have concerning side-effects
- Multiple parents in Oregon and elsewhere have asked for advice in case their child needs cannabis – people with similar situations to us, who, like us, never realized cannabis was an option
So on to Alex.
We got up at 5am on Tuesday, waited forever for surgery due to what I’ll politely call “communications issues”, and it was about 2:00pm before Alex entered surgery. We finally got Alex into the PICU around 6:00pm, and he was out of it until around 11:00pm… but from that point on he was awake and trying to smack himself all night long. A combination of factors made that night downright awful: Karen (Mom) had to go back to the hotel to care for our baby girl, the hospital didn’t have a sitter ready that night, and Alex’s group home didn’t have anybody available yet to watch over him. It ended up being up to me to stay with him all night, keeping him safe. I was there until 7:30am mostly alone, other than the night nurse who was kind enough to give me breaks now and again for food and such.
The rest of the week went a lot better. We got a full-time hospital sitter in addition to dedicated, well-rested staff from his group home, ensuring that no single person was going to be exhausted and without breaks. Alex was hating being cooped up, but he got better each day.
Friday we left so grandma could go back home. She had been with us for over a week and a half helping out with Alex’s brother, but she needed to get back home, so we had to cut our visit with Alex a bit short. Honestly, I am glad to have had a chance to rest after such a crazy week, but it’s still tough to leave the kid without his family
So tonight we go back up and spend more time with Alex. Tomorrow he should be leaving the hospital, and we should be coming back home again, but this time with the new plants I mentioned above.
Here’s hoping all goes well and when the new plants are able to be re-cloned and harvested (which is still a long ways away as I understand it), we’ll have a medicine that makes an even bigger difference to Alex!