Normalcy is a beautiful thing

Not long ago, it was brought to my attention that there are folks that followed this blog that I'm not connected with on Facebook that are probably still wondering how things have been going since we got back home in June.

It's funny how the scariest parts of the year are just memories now. Already, I've started to forget just how rough Brandt's first few months were. We've gotten used to life at home now, and are enjoying a true return to normal, even though this still isn't a permanent thing, and never will be. Hearts can never be permanently fixed, and even a transplant would simply mean switching one set of problems for another, so we'll never not be in a medical mindset when it comes to Brandt. Sometimes, however, the gravity of his situation lessens a bit; at our cardiologist appointment upon our return home, we had another echo done that showed that Brandt has come out of heart failure! We don't know if the meds he's on are supporting it, or if it just finally perked back up after being hit with first a cold and then a major surgery, but we aren't complaining!


Either way, we're glad for it, because it means that transplant has been pushed further down the line. (Note: we are not and have never been listed for transplant. I'll make sure you know when/if that happens.) Right now we're back on the Fontan route, which will probably be happening in two or three years. Apparently, three years of age is ideal, according to Dr. Ruggerie, but I can't really remember what makes it so special. Either way, the actual date will be determined by Brandt, regardless of how much effort we put in to trying to schedule things, as he proved this past spring.

Our most recent appointment was on Thursday, and he's in good enough shape that they deemed another echo unnecessary, and started stretching our appointments out to every two months! Our next will be sometime in December.

We did just get back from a trip to Oregon to see Tanner's family. A friend of his was getting married, so we decided it would be a good time to squeeze in some of the things we'd been meaning to do. The last couple times we visited were after our trips to Seattle, and this time we wanted a nice, relaxing stay. Wade had almost too much fun with his cousins...I've never seen three boys so entirely covered in mud before!

While we were out there, I took Brandt to an appointment with a naturopath/nutritionist that I've been wanting to see for a while. Western medicine, though it obviously saved Brandt's life, has an annoying way of forgetting that nutrition beyond basic calorie counts is actually a HUGE part of general health and well-being, heart defects or no, and though they do their best to fix him, some of their solutions are two edged swords. All medications, such as the ones that he takes four times a day right now, come with side effects, and some of them are ones that cause long term health issues. It's all a matter of expedience...Yeah, this medication will keep his heart running, but in the meantime, it'll start wearing down his kidneys until they start failing. It's a vicious cycle.

Anyway, that was the long way around to say that I wanted to see if there was anything we could do to boost his system to help him cope with the state his body is in. This doctor primarily works with muscle testing, which is a way of learning where the stressed points in the body are at. Obviously, one was his heart, but another major issue was his liver. I was glad he noticed it, because I had been expecting it eventually. The liver is one of the first organs to go downhill when the heart doesn't function correctly, but Western medicine doesn't tend to catch it until symptoms begin to show up, and at that point, it's pretty critical. Hopefully, taking action this early will help prevent future problems!

We went home on five more supplements (after checking into the possible negative interactions between them and his prescriptions) to help boost his heart and liver, which in turn, should help his kidneys, which were also beginning to show signs of strain...go figure. Since being on these supplements, his O2 sats have gone from 77-78 to 83-84, so it seems like his body likes it!

Meanwhile, Brandt has figured out how to sit up, which is fantastic in my book. The poor kid was getting so bored, with the brain of a eight-month-old but the physical capabilities of essentially a two-month-old. Now he's delighted in this new-found ability, even though he tips over a lot. STILL can't roll over, which has become something of an ongoing joke around our place. He'll probably learn to walk before he figures that out *eye roll*.

He thinks Wade is absolutely fascinating and, at times, hilarious. When they sit side-by-side in the car, Brandt will usually spend the whole car ride staring and grinning at Wade, and occasionally giggling for no discernible reason. It's more than a little cute. Wade, in return, pulls out all his goofy moves to get little brother laughing. He's much more successful at it than I am...Brandt's laughs are pretty exclusive, and apparently I don't rank high enough!

So that's the basic update around here! Fingers crossed that I don't have to post any new exciting stuff any time soon. We're very much enjoying having our "normal" munchkin home with us, and hope to keep it that way for quite a while!