8/20/15

Rejection Score

We received a couple of emails from Children's yesterday. First of all, Carla's rejection score was a 1R, which means there was some mild inflammation but nothing that they would try to treat. Her rejection score has always been 1R. They spoke about her at their weekly meeting and have decided a couple of things. First of all, we don't have to see a cardiologist for 3 months! Which means we don't go back to Seattle until February!!!  We have literally been to Seattle every month for the last three months, so it will feel foreign to be away for so long. Secondly, they want us to do a sleep study for her, because her oxygen saturations drop while she sleeps. Thirdly, they want us to collaborate with an Endocrine or Adolescent Medicine specialist, because her anti-rejection meds can interact with the statin she takes and cause side effects related to hormonal regulation. We will talk to Carla's Pediatrician and find out if she has any suggestions, or if we will have to go back to Seattle for these things.  Fourthly, they want us to make sure that Carla eats a regular diet that includes healthy saturated or cholesterol rich foods, since she is not using the statin to manage high lipids... "She should strive for healthy, lipid intake" ... I guess  I'm not exactly sure what a healthy lipid intake would be... but maybe bacon and eggs for breakfast? I'll do some research, I'm sure this will not be a problem.

We could not be happier about the results that we got this year for Carla's biopsy/cath! What a huge relief.

School starts Monday for Bobby and Tuesday for Carla. We are still in the middle of building our "apartment" and our whole house needs to be packed. I'm sure it will all get done eventually...

Love, Jen


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