We’ve certainly had some close calls the past couple of days. I was certain that we were going to be back on the halls on 5D yesterday. Rafi’s fever was climbing up a little, although we couldn’t trust the thermometers we had. Yesterday, we had two thermometers, one you can put on the temple and we had a cheap under the arm thermometer. The temperatures were all over the place. With the temple one, it one place it would rad 98.3 and in another place it would read 101.6. We knew she didn’t have that kind of fever so we pulled out the axillary thermometer. That gave us different readings within a 15 minute time period. WE had a clinic appointment anyway so we figured we would just get a reading then. Turns out she had a low grade fever that kept declining as the appointment went on. Phew.

We are dealing with some skin infections at this point and we think this has resulted in her elevated white counts. Yesterday, her WBC was 24. That’s pretty high and is a sign of infection. We are goign to get that checked again this morning at clinic. The wounds are getting better and we hope this leads to a lower WBC. I have a theory about all of this. Rafi’s cyclosporine (CSA) level was over 500 the other day, and the goal is to be between 200 – 400. CSA is an immunosuppressant so I wouldn’t be surprised if the increased level was partly responsible for Rafi’s inability to clear the skin infections and thus the low grade fever. I am sure there are people who will argue both sides of this theory, but now that the CSA level is back down in the mid 200s she seems to be fighting off the infections. I am not one to believe too much in coincidences.

In the next couple of days Rafi starts her feeding, occupational and physical therapies. We are looking forward to the feeding therapy the most. We were going to start feeding therapy last year in NY but it, of course, got denied by insurance, and instead of appeal the decision we figured we would wait until after the transplant. Three days after the insurance company denied the feeding therapy, they approved the transplant.

Rafi’s language development continues to amaze us. She is a very funny and loving little girl. If Jackie or I stub a toe or make a noise, Rafi comes over and says “Mommy (or Daddy as the case may be), you ok?” She is laughing more, speaking in complete sentences, ignoring us and just causing trouble the way a two and a half year old should.