Sunday, March 16, 2014


We stayed home all day and honestly forgot to put Gavin’s compression sock on until lunch because the kids were in pjs.  We thought about it, then decided to let it go.  When he was taking off his clothes at bath time, he said, “Yay, I’m normal, I don’t have to take off my compression sock like Macie and Lilah.  I’m normal!” We’ve never told him he wasn’t normal, but it broke my heart.  He is noticing it more and more.

Also, the other morning, his leg started bleeding.  It’s bled a few times before, but this was the worst.  I guess he scratched it and we had a harder time getting it to stop.  This is another symptom that will continue to get worse as he gets older.  Not only is the bleeding concerning, but it also opens up possibility for infection. 


The dark little spots are from the bleeding

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