Forgotten Fotos

Every once in awhile I like looking through recent pictures, and usually I have a few surprise "daily life" pictures that I've forgotten about. Here is one from the last few months:

Swimming for the first time since Brian has his tubes put in. The doctors gave him permission to go swimming for a friends' birthday party, but he had to wear a HUGE bandage and had to put up with awkward stares. Ask him if he thought it was worth it ;)

A Little of This, A Little of That

I'll start with the questions that are frequently asked!

"How is Brian?" He's doing pretty good these days. Still some uncomfortable side effects on a daily basis, but they're diminishing enough that he is living life much easier lately. The headaches and nausea are still frequent, but he's not REALLY sick like he has been. He even looks better and, I think I can safely say, I believe he's finally stopped losing weight! Eating has been hard for him with the constant nausea, but I think it's getting better.

"Did you finally get disability?" Yes. We are breathing a very huge sigh of relief. It is so nice to have a bit of income again. I quite literally jumped for joy when we got the call saying our first cheque was waiting for us. And then I went grocery shopping ;)

"Is Brian continuing to get Soliris?" That was more good news we recently got. The drug company that makes Soliris tried to get the government to fund it, but quickly realized they weren't going to make much progress. So they decided to approve Brian for the drug three months at a time again.

"How are Brian's 'numbers'?" His creatinine continues to decline (which is good), his platelet count is stable, his red blood cells finally normalized for the first time since all of this began. Generally, he is STABLE. Stable enough that we got some MORE good news recently. His main doctor decided to pull the line! In just over a week, he'll have day surgery and they will remove the line that goes to his heart. They don't believe he'll need the line for further PLEX treatments. That also means he'll have one less appointment at the hospital a week because he doesn't have tubes that need to get cleaned. And in an effort to keep his veins "clean", they have requested that he only get bloodwork done at the hospital when he gets his Soliris dose. That means he's going from about 3 appointments a week to 1 every second week! That is HUGE for us and frees up a lot more time.

"How are you and the kids?" We're good! I've been working and trying to come up with ways to support my family. I'm getting creative in my solutions to all the financial issues we've had. It's hard work. The kids are doing great and that means I'm doing SOMETHING right in giving them as stable a family life as I can manage!

Thanks for sticking with me through all of this!