Last week Thursday we had through and emotional appointment with Dr. R….I am working on a post about that appointment that I will post when I am finished.
In the mean time, we are scheduled to see the top motility specialist at CHOP today. We were originally scheduled to see this specialist on October 26th…well, we know what happened then. We are hoping that they will have some valuable insight into Lucy’s issues. This will be the first time that we meet with this doctor, please pray that Drew and I are able to convey all of Lucy’s pertinent medical information to this new doc. It is never easy for us to meet with new doctors, Lucy’s medical file weighs more than she does!
We also have an appointment with Lucy’s metabolic doctor today. CHOP aspires to be one of the top mitochondrial research centers in the country. They recently recruited one the top mitochondrial researchers in the field (Dr. W), and we are hopeful that life saving research so close to home will eventually be in the future. As for now, we will continue to follow with metabolism in hopes that we can have access to some of this life saving research.
Lastly, we are meeting with the Pediatric Advanced Care Team (PACT) at CHOP. They provide palliative care, “Pediatric palliative care is a comprehensive approach that focuses on the psychological, social, and spiritual needs of patients with life-threatening illnesses and their families.'” We are looking to the experts to help guide our whole family through some of the varied emotions and experiences we are facing with Lucy’s life.
It is going to be a long day…we know that!
Thank you in advance for all or your thoughts and prayers! For all you prayer warriors out there here are some specifics that you can be praying for. Please pray that it will be a productive day, that Lucy has the ability to tolerate such a busy day, that Drew and I are able to advocate for our daughter and family effectively so that our needs will be meet.