This post has been a long time coming. I've slipped into bad habits and sort of let the blog go. I do intend to keep updating, but with Instagram and Facebook always at the finger tips I find those platforms to be the quick (lazy) way for me to pass along information.
A lot has happened since my last update. Josh is a big third grader now, and he's at a new school. The school is a really good fit for him and he transitioned almost seamlessly. That's not to say life as a third grader is glorious because it's proven to be quite rigorous, and a bit overwhelming. But he's getting through and I can see he's really growing as a student. Of course, we are very happy for that!
On the medical front, everything has been stable. I hesitate to type anything too optimistic because we could have the rug swiftly pulled from beneath us later this week. Josh will have another heart catheterization on Thursday. His last cath was +2 years ago and they weren't too thrilled with his pressures at that point. The purpose of Josh's caths are to determine if Josh is ready to be listed for transplant. We personally weren't ready to list him for transplant 2 years ago because his quality of life seemed too high to list him, though the team at Stanford felt he was certainly a candidate. If I'm honest, I hope for improvement with the results this week, but I don't expect it. I think best case scenario his pressures won't have gotten any worse.
On my end (this is not scientific or backed by medical findings), I think he's doing better than he has in years. He rarely vomits anymore & when he does it's generally anxiety induced. He's finally growing a bit and he's very active. There was a time when he was vomiting up to 3x a day, and for years his growth practically plateaued. So I'm definitely very much hoping to hear good news on Thursday, but the past 9 years won't allow me to put too many eggs in that basket.
Josh has handled himself pretty well knowing he has this surgery on the horizon. He's definitely been a bit more anxious, and it comes out in unexpected ways at times, but overall he's hanging in there. I'm hoping we can get his therapist to stop by and talk with him either before or after the procedure. He began seeing a psychologist a couple years back and has seen her on and off depending on how he's doing emotionally. It's been helpful to him and I'm really happy we have her as a resource.
I'll do my best to give an update on the blog, more than the 1 or 2 sentences I'll likely share on Instagram and Facebook Thursday evening. However, it may not happen until a few days after the cath. Thanks to everyone who still checks for updates, and shares in our love for Josh. I'm always blown away by the love and support we've felt over the years. ♡