Thursday, September 27, 2012

Normal life

Yes, it has been a very long time since I posted here! Life has been busy, but medically uneventful, for the most part. Nobody has been in the hospital this year except for the 2 days in January when Magnus was in for his cath, which is quite a departure from what we've been through in the last few years! Magnus is doing great, and this month started going to pre-K 3 half-days a week. Magnus is very social, so we'd wanted to do something like this for a while, but his eating issues and feeding tube have been the primary obstacle in the past. He doesn't need to use his feeding tube all the time, but we knew that many places were not going to want to deal with having a g-tuber and having to be prepared for if the tube were to come out. Luckily, we found a place just a few blocks from home that was not daunted by the feeding tube, and since the school day is only 3 hours, we wouldn't have to worry that much about whether he was eating at school. And now we are actually experimenting with 1 month of not using the feeding tube. So far we're about 2 weeks in and he doesn't seem to have lost much, if any, weight! The GI docs say he has to go without using it for 6 months before we actually take the tube out. One thing I'm NOT looking forward to, though, is having to transition him back to taking all his medications orally. We sometimes have had some success squirting a little bit of some of his medicine in his mouth, but I'm sure he's not going to like taking ALL those meds orally twice a day. I have to admit that I have my own set of neuroses surrounding this topic; I used to get a lot of ear infections as a kid and would have to take foul-tasting "cherry" flavored penicillin pills. It was actually so traumatic that I would hide the pills under the couch cushions instead of taking them, even though my parents threatened me that if I didn't take them I could go deaf! Deafness seemed preferable to swallowing those pills! (Luckily, as it turned out, my parents were bluffing, and my hearing is just fine). So that's pretty much where we're at right now. I will end with some pictures of what we've been up to since January:
This was an outtake for the Valentine's cards we sent out this year. It's only from January, but he looks so much younger here!
This spring he tripped and hit his forehead on the concrete floor in our garage. He subsequently developed a huge goose egg and 2 black eyes thanks to his daily aspirin therapy!
Playing in the sand during our East Coast summer vacation. And yes, wearing that same Star Wars shirt!


  1. So awesome! Yay for the normal life :)

  2. Thank you for the article on the thymus and t cell relation. I am going to print it out and bring it with me to our next cardiology appointment and see what the doctor says. I am curious if C had this as C did not have her first OHS until 4 months old. Thanks again for the info.