Really not much has changed since I last posted. Lucy continues to have all of the same symptoms, her temps have managed to stay below 10o which indicates to us that these temps are related to her autonomic dysfunction, her body’s inability to regulate processes that the body does automatically. We aren’t surprised to see her responding this way, her body is really trying hard to adjust to all that it has going on. Her resting heart rate remains high, in the 160’s, which we know is wearing her out. We are seriously looking into finding some meds to control and manage her pain better. Lucy’s body does not metabolize meds normally which makes finding a med that works difficult, currently we are using Tylenol with Codeine because…its working. We met with Dr. R on Monday after e-mailing and talking on the phone a lot over the weekend. It was an appointment in which we discussed how “sick” our little girl is and how we want to give her “quality of life” at the same time do all that we can. I think that for anyone who has not walked in our shoes an appointment like the one we had on Monday would have been awful, oddly for Drew and I it gave us a sense of peace.
We are so very grateful for each and every thought and prayer being said for our little one and our family. We are in awe of the impact that our little one has had one our lives and the lives of so many others. When I fist laid eyes on Lucy I stated “ this baby was born for a purpose!”, little did I know!