August 22

I continued The story about Calev on my other blog- if you want to read it, just click on the link that says "Rachael's space". He's doing great. He just got back on Friday from 5 days at cub scout camp. He had so much fun- this year, being a Webelo 2, they took a five mile hike up Blackcap mountain, and camped overnight. He brought a camera with him, and took 2 rolls of pictures while he was there. I love looking at pictures that kids take- they're so different from ones Richard or I would take as adults- Kids have such a unique perspective.


A couple weeks ago, we went to EMMC for Calev's echocardiagram, and appointment with the cardiologist. It all looked great- no sign of Marfan Syndrome, or anything at all with his heart (except for an innocent murmur). That made us very happy!! At this point, we can pretty much say he definately doesn't have it. There's no specific test for it- they basically look for certain signs, and diagnose based on that. To get a diagnosis of Marfan's, you have to meet 2 major criteria, as well as a certain number of minor criteria. The major criteria are skeletal symptoms , (like arachnodactly, double-jointed, extra tall, and extra-long bones) Cardiac symptoms (aortal dilation, etc), genetic predisposition, eye problems (specifically lens detachment I think), there may be another one- I'm going on memory here. But basically, Calev doesn't have a single one. He does have one of the minor criteria, which was the spontaneous pnuemothorax, but that's it, and not enough to diagnose a connective tissue disease like Marfan's. His doctor still wants us to keep Calev's appointment with the geneticist, and ophthalmologist, though. I don't really see why, but then, I'm not the doctor...


Since his hospital stay, they put him on an inhaler that's a topical steroid. At his recheck appointment several weeks later, his peak flow was still at 200-240. His doctor said it should be up around 350 at his age/size, and was hoping that inhaler would help, and bring it up. Now thay added Singulair to the mix, and we'll see how that goes. They also ordered a Pulmonary Function Test (PFT) to make sure there's nothing else going on. We just went for that on Monday morning. I really want the results, but don't know if they have them yet. I'm glad they did that test- Richard and I had just been commenting that Calev had a lung issue, and it seemed like they were setting him up with a specialist for everything except for his lungs!!


Really, though, at this point I'm not worried. Sometimes these things happen spontaneously, and there just isn't a reason, or at least not a reason that has any lasting effect.





Now that summer is drawing to a close, at least here in Maine, we're doing as much as we can outdoors. We went to Popham Beach yesterday, which was a lot of fun for the kids. Ezra eats an amazing amount of sand there- He actually just uses his shovel like a spoon, and shovels it in. I try like mad to keep him from eating it, but when you're stitting there on acres and acres of nothing but sand, it's virtually impossible. So, I see it in his diapers for a few days afterwards- and let me tell you, sand is HARD to get off with a wipey!!