One day at a time

Wow, I can't believe it's been a month since we've posted. I apologize for that, but we've been pretty busy. Things are going OK for us. Hunter is steadily making progress to being a normal kid, but it looks like that will be a fairly long road still. We took him in for a checkup with the cardiologist a couple weeks ago and also for his second swallow test. He failed the swallow test again on the thin liquid so he still has to have a feeding tube for a while longer, which is a pain. Since we left the hospital, we've had to take him in 4 times to have that thing replaced, 3 of the times were within a weeks time! It just gets clogged really easily and it's easy to pull it out. The kind he has requires X-ray to make sure it is in the right place, that's why we have to take him in to the hospital any time something happens. Anyway, we can start feeding him from a bottle, but we have to thicken the milk so it's easier for him to swallow correctly and he can only eat like this for 5 mins, twice a day. We started taking him to a speech therapist to work on his breathing, sucking, and swallowing to help him fine tune his skills, however, the speech therapist estimates he probably won't pass the swallow test any time soon and that he could have the feeding tube for another 3-4 months. He's been steadily gaining weight though and his last weigh-in was 8lbs 2oz so we are happy about that. The poor guy has been having acid reflux issues as well as bad gas since we give him a pacifier quite a bit to help keep his suck good. It seems like we are constantly pumping that kid full of medications to help him stay comfortable. This last visit to the doctor came with some bad news too. It had looked like the clot in his heart had grown a little since we left so in addition to the twice-a-day shot we've been giving him, we have to give him some baby aspirin as well to try and keep that clot from growing any more. It really seems like since we've been giving it to him, he's been even more irritable. We go back in July 7 to have his heart and the clot checked out again so we'll post an update then. Everything else is the same. We're just kind of in this phase where everything is part of a routine with little to no free time for ourselves, that's why it's taken so long to post anything on here. We're always looking after one of the kids or each other, hardly ever our self except to shower, etc. It's been tough and challenging and it's really worn on us, but we'll get through it, hopefully stronger.