Thursday, March 27, 2014

Days +210 to +217: Improving, But Not Out of the Woods Yet

It has been an exhausting first week home. On the good news front, Ezra's hemoglobin has improved nicely. As of yesterday, it is actually higher than it has been since December when he was first diagnosed with iron deficiency anemia. The level is still below normal, but is much better than it was last week. Ezra's energy has reflected this increase, which is great, especially considering the challenges he continues to endure. 

Ezra's platelets, on the other hand, have been giving us problems this week. On Monday, his platelet count had dropped significantly, so he received another round of high dose IVIG. Thankfully, his counts yesterday showed that he responded well to the treatment. Given the drop in his platelets, it is clear that he is still destroying his own platelets (and likely red blood cells too) and the autoantibodies are still wrecking havoc, albeit with less steam than before. 

Based on the positive counts yesterday, Ezra's doctors decided to attempt a very slight decrease in his steroid dose. We are hoping that he does fine with this decrease and that his counts  do not drop because that will mean an increase in steroids - a place we do not want to go. 

Ezra has been a real trooper so far, dealing with excruciatingly long clinic days that turn into clinic evenings three times a week. He is doing fairly well with the mood swings from the steroids, although he is very bloated and it gets worse every day. 

Despite the difficult clinic schedule, we are very grateful to be home. Ezra was thrilled to be reunited with his beloved teachers this week. We are trying to provide at least some normalcy to his days at home, which of course includes model rocket launches! 

We have big plans for his 5th birthday re-do party this Sunday. We decided not to wait for things to settle down, as they may not settle down for a long time. We've learned time and time again to act in the present and to not count on the future. So no wasting time - party hats are on and we're ready to celebrate!