Sorry I havent updated in a while, but there hasnt been much to say. Not much has changed. Julia has good days and not so good days. Her skin is clearing up really nicely with the ECP treatments. The doctors have started weaning her down off the steroids and we havent noticed the rash coming back, which is great. Her stomach is a different story though. She has had some bleeding on and off for the past week, which is not unheard of with GVHD of the gut. They have been keeping a close eye in her platelet count and hemoglobin counts and transfusing when necessary (almost every day). The past 2 days she has had more bleeding than usual, and she seems to be more uncomfortable too. They are running tests for viruses and infections, but she hasnt had any fevers, so they are doubtful thats what it is. If they dont have answers from the tests they will likely do another scope to see where the bleeding is coming from. All of her vital signs have been good though, and she even smiles occasionally. I havent been able to catch a pic of her smiling because as soon as I grab the phone she wipes the smile away. I guess thats her way of saying she is not photo ready. We started working with physical therapy and occupational therapy. She still has full movement in her legs and arms, but being in bed for over a month has weakened her muscles, so we need to push her to have more awake time and try to play and just do more. She does not like it, but hopefully when she starts to feel better, she will enjoy playtime more.
Posted on: Wed, 09 Jul 2014 15:18:21 +0000
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