When a pulmonologist with over 20 years of experience declares your family’s case is “Weird”…you know you’ve got issues.

Yesterday Angel had her (4th) CF birthday visit. Brandon had his first CF visit ever.

There was the standard blood work, sputum cultures and x-rays done and then after lunch we got to meet with our pulmonologist. During the entire day the oddness of our family’s case was expounded upon.

* Both have defects on the CFTR gene.  They both have slightly different defects. Angel’s leans more in the ‘standard’ CF direction…Brandon’s does not.

* The defect for both kids is one that has not been seen before.

* It is generally thought that their case of CF is “mild” as per the standard.

* Both of them had positive sweats, but in a low-positive area.

* In the strangest note of the day the pulm said that you could lay Angel’s x-ray on top of Brandon’s and the affected area in both of them would match up perfectly.  They have almost identical lung damage in the almost exact same place.

We are moving forward with them.  Their treatment plans are set.  Brandon will have another test (a new CF diagnostic test).

We will meet with the genetic counselor still – the appointment is a month out.  It was suggested that because of the oddness of our case we may all end up having our genetic tests run.

Until then we continue on. As we have been.

One foot in front of the other. One day at a time.