date set, date change

We finally got heart surgery scheduled, my mom bought her plane ticket out here, then came the phone call no one wants to hear! Another baby has to have urgent surgery and will be taking our slot. That's frustrating, but I feel for the family dealing with the emergency situation. Ours is hard enough, without the 911 rush to it. So, now, surgery is scheduled for May 16, with pre-op on May 13. Daddy will be spending his 30th birthday (May 17) watching his boy on life support. I'm sure that will be a blast. We're going to celebrate early and make it worth remembering, since our hospital stay will probably be something we'll want to forget.

We got a new referral for a new neurologist, but they put the wrong doctor's name on it, so that's a work in progress, and moving slow. Keagan has had a stretch of pretty good days lately, so that's been a blessing for sure. Yesterday was a little rough, he fell a LOT, but he didn't seem to be in much pain, just agitated and irritable at times. His speech is getting better in some ways, and still degenerating in others. He still won't say mama, but I hear all the love and admiration I could ask for when he calls me "da" so I'll take it for now, and pray for a day when he can call me mommy again.

Speech therapy seems to be heading in a good direction. We're working on some alternative methods of communication, called PEX boards (I can't currently remember what it stands for)-- pictures that he can point to and ask for things. I took pictures of common household items (none of which he struggles with) for him to start out with and get used to. Then, we'll move on to other things that he DOES struggle with. I'm also looking into some sign language, hoping that might help as well, while still encouraging his verbal skills.

Not much to report otherwise medically. We're all hanging in, trying to get through this experience before we start getting ready for baby number two (due in November). We're trying to maintain some sense of normalcy in an upside down world, and that's all we can do for now.