Why does every one of addysons doctors say “she’s one that sticks with me and makes me think”? They all also say man, she’s still full of spunk even years later. Let her keep that sass it makes her the fighter that she is.
Today we saw her pediatrican and we talked through everything. We discussed her growth, gi stuff, seizures, her autonomic dysfunction, mito etc. Then we discussed her fever disorder and he said oh no I was hoping that was gone. I said us too but it seems it’s back…. For 8 months now she’s had a flare a month so sadly it’s back and she’s currently in a flare. I’m glad he saw her during a flare cycle. He suggested a change so we emailed rheumatology to see if they agree. Fingers crossed they agree and it works.
He was happy with her growth, even though it doesn’t seem like a lot. He said he can finally see the trend upwards for a year or hard work with feeds. We will continue to do feeds and fluids.
He wasn’t super happy w her last tilt table test numbers. He said it’s quite impressive that her heart rate jumped that much w a tilt table and that’s with her “controlled”. He said your hr should only jump that much after running like a 5k. The phrase quite impressive definitely wasn’t a good impressive… It was more a oh shit impressive. But we are used to that w her
Addyson did very well getting her two shots today! Monday she has another infusion
Addyson was in such a mood yesterday. She gets annoyed that everytime shes off school we have Drs appointments, but that’s what happens when your chronically ill. I understand her frustration but I get tired of being a one to take the blunt of it at times. Usually it doesn’t bother me but sometimes it just gets old, but so many of our friends understand these feelings.