Friday, November 18, 2016
Hey everyone - I just wanted to send a quick update on the girls.
Elle is headed to Ohio for infusion #6 Monday with Aunt Dawny (my sister) and will be home on Wednesday. Infusion day changed due to Thanksgiving, back on Thursdays on 12/8. We are so thankful Dawn is able to help out. Frazer can't make the trip and I need to stay with Milla right now.
As for Milla, she is not doing well. Since going into LeBonheur last Wednesday, we have yet to find a good balance with her meds that keeps her happy and comfortable. This past week, we have had her on an IV antibiotic to fight a UTI and we have changed her med schedule to getting meds every two hours and we have not seen great improvements. She is either sleeping/passed out, upset or dealing with spasticity (involuntary tightening of muscles) and she gets upset (crying/sobbing) often. In addition to all of this, she is not eating much, at all. We are working hard to get things calmed down for Milla (more medication) and to find a balance so she can get back into her groove, but we have not been able to get there yet.
Please pray for us and our girls. Pray, pray, pray that we can keep Milla comfortable - we are having a hard time with that right now.
Thank you as always and much love,