Last Friday we went to the Boston Children's Hospital to have Christopher looked at. It was a little crazy, being at the world's number one children's hospital. We were actually an anomaly, being from Massachusetts, since patients come from all over the world. Christopher met with a few doctors and residents to confirm his diagnosis of blue rubber bleb syndrome. It is extremely rare. One of his doctors is a world's expert on the syndrome and has only seen about 75 cases in his career. It causes malformations of the veins, which is why he has spots on his skin. It also is the reason for the growth in his shoulder. One complication is that the intestines can start to bleed due to sores. The good news is that none of this is generally life threatening if watched and treated as necessary. One woman in Massachusetts has it and is in her 60's right now. The bleeding in the intestines can be a problem so at some point he may have to have his intestines monitored. He'll likely be back in the next few months to have surgery on his shoulder to get rid of the tumor. It's quite a blessing to be here in Massachusetts since if we were anywhere else it might have taken a lot longer to get a proper diagnosis.
1 comment:
So glad he is getting the help he needs, especially by a world expert. Been thinking about you ever since I heard. . . hugs and prayers!
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