He is a really great doctor and it was very nice of him to say that even though he mocks me, laughs at me, or makes fun of me he truly wanted me to know that I am a great mom and is grateful for the fight in me and how I made people listen to my concerns to help my daughter. But I had to remind him that I wouldn't have my daughter if he, Dr. Badgett, Dr. Cooke, and Dr. Cooper hadn't worked together to diagnose her and save her.
He also asks about the other kids with ROHHAD. He had spoken to Denika's doctors in Canada at Sick Kids. So I gave him little updates on some of the kids.
He informed me of the last 10 months recap:
- Haven has not gained any weight in 10 months
- She has grown
- Sodium levels remain at normal rate
- CO2 has dropped 5 points
- She is once again potty trained
- Personality has changed and she is laughing and singing now
- Blood pressure is normal and we haven't been on meds for 10 months
- She is going to school part time
I am very happy he had the guts to make a stand and give her a treatment that no one has ever tried on this disease and it finally feels good to have complete trust in a doctor.