Baby steps? Maybe. But I am still celebrating. Today has been good to us. We learned Reese gained almost one and a half pounds in a week putting her on the less at risk column. And tonight we had the last dose of the terrible sticky medicine. So it’s good bye twice daily fight whereContinue reading

Best thing we have seen in 2 solid weeks. Wanting to eat so much she holds her own bottle is 100x better than having to fight for every ounce she swallows. Now we hope to gain the 2 pounds back that she has lost since Dec 1.

Crummy week. What good is being right. Therapy.

Writing it makes it real… Don’t know whether it’s healthy therapy or teetering on depression though. R is on her fifth seizure in 54 hours. The old pattern is back. One at night, one in the morning. Give her all day to recover, seems better, and then BAM! One right before bed. And so on.Continue reading “Crummy week. What good is being right. Therapy.”