Today I had an afternoon meeting with Dr. Cooper, Haven's Pediatrician. We meet about every 6 weeks to review Haven, where she is and was. We go over any notes that I have and get them in order for the other doctors Haven visits.
We reviewed the notes from Cardiology and Pulmonary and what the doctors had written in their reports. I got my copies for my files. She said I could probably copy their upper notes to take with me to any new doctors so we do not have to go through it all over and over again! Good idea.
We're still waiting for anything from Cardiology. I mailed the halter back to them on Monday so I'm not sure when they would've received it.
We have a meeting with Endo on May 4th so we reviewed some medical info from Susannah's mom and thought it would be a good idea to mention to our Endo. Susannah just recovered from surgery for Cushing's Syndrome. Which Haven has been tested for a few times. She copied me on an email she sent to my favorite mom in Europe and a few areas caught my attention!
We are doing well on the Pulse Ox machine. We know how to use it and I am confident in the results now - after talking with Pulmonary earlier this week. I keep a detailed log of her stats throughout each night.
I discussed Chicago with Dr. Cooper today and it really helped to talk to her as she has no bias to go or not go. Kris and I discussed it tonight and I believe we have come to a decision. Kris will discuss it with Oncology tomorrow and then we will confirm what we are going to do. We have been thinking hard on this decision and I have been working with our case manager.
I found some of Haven's old records yesterday while digging through boxes. Some reason I feel like I already said this but don't remember. Anyway, we have her blood records from July 2006 and two of her MRI reports from 2007. So I will scan that in and email to all of her doctors.
Until the next doctor appointment tomorrow - that is today's update!
Love to all