My Precious Princess

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My daughter was born full term with no issues during the pregnancy. She had good apgar score and seemed just fine. She took formular well and grew some but was always small for her age. We constantly asked about this issue but we're always told to be happy she wasn't obese and that her height wasn't an issue.

When she was 5, she started feeling very week. Took her to the doctor and they figured it was he flu even though I knew she didn't have it. It was something else but you know how it is. Why listen to the parent when they know better. Right! She got weaker so I took her back. Same story. On that Sunday, she says to me, "Daddy, I don't feel right." She'd never said anything like that before so I knew something was wrong. I took her to the ER and said she's not well, what can it be. Same story as before. Now I'm really getting frustrated and one doctor finally says, let's draw some blood.

The potassium level was 2.0. Borderline heart attack. They all panic and figure something's wrong. Again with all the flu questions. This time they listen and realize it isn't the flu. So it's a roller coaster night of high potassium, low potassium as they give her potassium and the stop the IV. So 9 hours later, her pediatrician looks at her morning roster and sees my daughter is in ER. She comes over and we tell her the story and immediately says we don't belong in an adult ER. She arranges for a transfer to pediatric ICU for monitoring.

Four days later my daughter is stable but low, 3.5. We get a referral to a pediatric nephrologist and she plays 20 questions with us. The difference this time is that all the questions are spot on. We asked her when she'd met my daughter and knew so much about her. Seems she's just a classic case of Bartters. We're lucky as she is only slightly affected by it. On a scale of 1-10, 1 being really bad, she's a 7.

From then it's been a long journey. Many bouts of "I'm not hungry", "I don't know what to eat.", "I hate my medicine." Luckily it's mostly past that now and she's doing well and caught up physically. However I believe the delay in diagnosis kept her from growing a bit taller. She is 4ft 11.5in. She prays for that 0.5in.

As long as she takes her meds, she's very healthy. She was the captain of her tennis team and is in good shape. We worry about dehydration and her meds but otherwise I'm happy to say, she'll outlive me. We're very blessed.