I took Grace to her pediatrician this morning to get her weekly blood pressure and weight check. Turns out her blood pressure was significantly high (which is a potentially serious side effect of the ACTH). Our pediatrician spoke with Grace's neurologist on the phone, and it looks like we're going to be weaning Grace more quickly off of the ACTH than the original plan called for. The wean off will consist of about 3 weeks vs. 5 weeks. Pray that Grace's blood pressure goes back down to normal and that the ACTH will still work in spite of the shorter treatment time.
Off to bed (sort of). Grace has been crying for the past couple of hours and it doesn't look like she has plans of settling down any time soon. Continue to pray for our nighttime sleep.
- Michelle
Aw Chelle, definitely praying. Darla (Kennedy/Bolger) and I were talking about you guys yesterday and how brave you are. So hard hearing these things while being so far from you, wishing there was something I could *do* for you. I really appreciate these updates!
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