Gearing up

Jeff and I are gearing up for the holidays and also for Alex's appointment. He goes to a limited echo and cardiology visit on Monday. We hope for more conclusive answers and hope hope hope we know what is going on. I think it would be a little crazy for us to go and STILL not know when things are happening. I did go up to PCMC and fill Alex's meds this week. We bumped into one of the Dr.s and he said they have talked a bunch about Alex. I also got a phone call from his cardiologist who apologized that we have been riding the roller coaster so long and hopes he can see what to do next. He didn't feel as though the angioplasty did much and he also feels like waiting and waiting isn't one of our best options either. We certainly can tell a difference in our little man. Before, we could take off his O2 to change his cheek Tendergrips or to get him the tub without worrying about him turning blue or struggling.... Now he turns blue so fast and he starts tugging or tracting. He is sleepy and cranky a lot more in the day but sleeps about the same. He just gets tired of playing and will chill out on my lap. I have tried some new measures in clearing up his bum and it looks better (thanks Glenda). The hardest time is night time and by the time I wake up and change him there are new bleeding sores. I am working on it. All in all we are doing pretty good and just hanging out.