Monday, June 21, 2010


Today we headed to Indy for Gavin's appointment. We have been told a lot of conflicting information regarding his hemagiomas. It's been a little frustrating, but I was hoping to finally get some questions answered today. We were sent to Dr. Haggstrom because she specializes in hemagiomas. She was so nice and took a lot of time to explain things to us. Biggest discovery of the day....Gavin only has ONE hemangioma. The teeny, tiny spot on his head is a hemangioma. (Because it is so small, she doesn't seem to think that it will get bigger or raised and it will eventually disappear.) The rest of them are not. All of the spots (toe, leg, scrotum, back) are part of one big "mixed malformation". It is a type of portwine stain (meaning it will never go away). She called them "mixed" because she isn't quite sure what is under the surface. He may have lymphatic vessels (I hope I got that right) and extra veins in this area. She noted that he isn't getting baby fat in the areas and that his legs are remarkably different. Basically, we will just have to "wait and see". Gavin will be going to see Dr. Haggstrom every 6 months until she doesn't see any changes and then he will go once a year. I think this will probably be most of his childhood. She did say that she wouldn't do laser surgery to dull the color and that we shouldn't let anyone else do it either until we know what is going on. That could cause internal damage that we don't know about. She didn't seem to think that it would in any way effect his muscle growth or movements. It may cause him pain but we have no way of knowing that at this time. She said it may be especially bad during puberty and he may have throbbing veins like varicose veins. We honestly will only know this with time. She does want to do an MRI but we won't be doing that for a year or so. For an MRI, you have to be perfectly still. Obviously Gavin can't do that, so he would have be sedated. She didn't want to do that under the age of 1 because it wouldn't change the treatment.
Gavin was extremely well behaved and handled his first trip to Indy well. He got a little upset at one point because I think he was lonely in the back seat and tired of not being able to stretch out. At the appointment, he was all smiles and everyone went on and on about how cute he was. How could they not? It was funny because Brian and I felt like we were on Grey's Anatomy because there were so many interns and residents. At the end of the appointment she took pictures so she can compare growth. As she took off his diaper and was snapping a picture, she said, "I hope I'm the only one to take pictures of this." We got a good laugh out of that! We go back in December. I'll keep you posted...

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