We hope everyone had a great 4th. We kept it low key with Haven just having 2 days of chemo right before. We didn't get to see any fireworks but we heard them. She was up with me until 2am and then back up at 5am. Needless to say, I'm worn out! She spent most of today with her dad. I slept a lot.
Quick update: My liver, thyroid, and kidney test came back good. I have 3 MRI's on Tuesday next week. Of course, I'm almost freaked out enough to not go! But my back was so bad yesterday I couldn't even walk. So I'll get them done.
Haven has a CT scan temporarily scheduled on Wednesday. It was supposed to be Tuesday but since I'll be scanned all day we had to move it.
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
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