elimination communication, and battling the worst diaper rash ever.
A week later, the swelling had gotten worse and we went back to the doctor. This time, the doctor called the local children's hospital, and after some consultation told us that he thought it was something called lymphedema, but that he wanted to have an MRI and an ultrasound done to be sure. Daniel and I went home and looked lymphedema up on the Internet, despite knowing that this would probably completely freak us out, which it did and I do not advise to anyone who may be in our situation, and found that while there is a lot of information about lymphedema in adult cancer survivors, there is little about primary lymphedema which affects children, and even less about it in babies as young as Juniper. What we did learn was that it is a permanent condition and could look really horrifying if left untreated. We were totally freaked out. I tried to find anything else it could possibly be other than lymphedema. She had a bad diaper rash, could it be infected, and that's what was causing the swelling? Was it a reaction to the vitamin K shot at birth (I did find that this does happen and had myself fully convinced that this is what was going on with J for about two hours until I moved on to something else)? An infected lymph node? I wanted so badly for it to be something we could fix. My mind raced with all the things I wondered if she would never do, and with all the things I feared we'd never be able to do as a family.
Everything looked normal at the ultrasound and again at the MRI. I held out hope that maybe it was something else, maybe it would just go away and my perfect baby would be perfect again. We met with our occupational therapist when Juniper was 5 1/2 weeks old for an eval. She thought it looked like textbook lymphedema. I tried not to cry. As we talked with her she told us that she had spoken with her mentor about what to tell parents of a baby with lymphedema. Her mentor told her to tell us: "treat her like a normal kid." Then I did cry. Our OT gave us so much good information and made us realize that while the lymphedema is something we need to manage, we don't need to let it define our lives.