12/4/13

Rejection Score

We just got the call from Children's that Carla has a 1R rejection score.  This is basically no rejection and so no intervention will need to happen.  Because her heart pressures are better they will start a taper down with her sildenafil beginning on January 1.  Right now Carla takes 20 mgs of sildenafil three times a day.  Beginning in January she will take 15 mgs three times a day, in February she will go down to 10 mgs three times a day and in March she will go down to 5 mgs three times a day. Beginning in April, she will be off of the sildenafil!!! We started sildenafil three years ago in April, to combat her plastic bronchitis and high heart/lung pressures.  It is really significant (at least to me) that she will be weaning off of it!  Other med changes include going up on her Cellcept from 175 twice a day to 200 mgs twice a day, because her levels were low. They are also taking her off the iron supplement as well as reducing her magnesium dose from 125 mgs three times a day to 125 mgs twice a day.  Depending on how her poos are going we can also reduce the amount of culturelle she takes and see if it makes any difference.  We will be seeing the cardiologists every 2 months, alternating between Dr. Hardy in Missoula and the docs at Seattle Children's Hospital.  In general this is all good news and we are feeling very blessed.

Thank you all for your continued love and prayers!

Love, Jen


Here are some pictures from our Seattle adventure. 

We were a whole family once again on Sunday :)

Our babies. 
Carla and Daddy with her bunny "Angela" before the cath/biopsy on Monday.



Carla and I before the heart cath/biopsy

After the heart cath/biopsy

With Daddy after the heart cath/biopsy

Those are some amazing vitals!  112 is the heart rate, 15 is the respiratory rate and 99 is her O2 saturations

And we are sprung!
Tuesday we visited the Hutch School for the first time since March.
With her friend Stephanie

Carla with her teacher, Ms. Melissa.  
We HEART the Hutch School!!!

After visiting the Hutch School, we visited one of our favorite Seattle haunts.... Zeeks Pizza!!! Yum!
Waiting for our food :)


Getting ready to head out :)

 After pizza we went and saw Frozen (amazing new Disney movie) and then to Aunt Punks for dinner with Tina, Dusty and Bobby's Auntie.  We had such a nice visit.  I am only sorry that we couldn't see everyone more, didn't take more pictures and can't stay a little longer!













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