Sunday, May 18, 2014

Days + 263 to +269: Never a Straight Path

After our positive update last week, we had another harsh reminder this week that we are not in the clear and this latest set back is not yet behind us. There were two issues this week: 1) the re-testing of the antibodies against red blood cells showed that Ezra is now positive again; and 2) Ezra's platelets decreased on both Tuesday and Friday.  With respect to the red blood cell antibodies, it is a "weak" antibody. Hid doctor said that she has no way of knowing if he is "on the edge of detectability;" in other words, he could just have easily tested negative as positive, or if there has truly been a change. However, the doctor said that we will go by "the whole picture," and his hemoglobin and another indicator of red blood cell destruction has been stable. 

Ezra's platelets, on the other hand, dropped this week. His platelets were getting closer to normal and the drop wasn't as drastic as it has been in the past, but it was enough that his doctor is concerned. His primary doctor was not supposed to be in clinic on Friday, so when she showed up, we knew it was not good news. The plan is to see what his numbers are on Tuesday and then unless the platelets come back up, he is going to get another round of high dose IVIG. It has been 7 weeks since the last dose of IVIG, and we all thought he was done with needing it. The doctor also halted the steroid wean until we know more. We are praying that we show up on Tuesday and his platelets are back up, and this week was all a blip. 

Ezra overall is feeling good and had a great week with lots of outside time. He even walked outside this weekend more than he's ever walked, an impressive feat while on steroids. Best of all, his curls are back! They have not yet appeared on the top of his head, but the back is covered in curls. We can't stop touching them and Ezra thinks we're crazy. May we never again have to wipe clumps of those curls off his pillow. 

We are frustrated with this latest step backwards. Once again, we thought things were improving and now we fear that it is all getting yanked away. We always remain grateful for what we have - and we have a lot - but we also want what every parent wants. We want to feel like our child is safe. Is that too much to ask for?