Well - I had surgery on Monday morning so I've been pretty loaded up on drugs the past few days and not really able to stay awake long enough to write.
Haven is doing very well with her home schooling. Unfortunately I have not been awake when her teacher comes so I haven't been able to meet her yet. I have slept from 10am - 3pm every day this week. Since I am going back in to my doctor tomorrow I should be awake to meet her.
I spoke with Haven's doctor yesterday. She will receive the IVIG this week. I planned to go in on Friday with her but I'm not sure I can sit that long with my foot. I need the pain meds and to sit for 6 hours of IVIG might just be too much.
Her doctor has also contacted Kennedy Krieger to have Haven evaluated. He believes Haven's obsession with food due to ROHHAD has made a habit over the years. Since everything else has been affected so positively with the treatments and the only area that hasn't been affected is food/drink he wants her to see a psychologist and have her evaluated. The last time we went to the institute I wasn't very happy. But am willing to meet with them again and hear what they have to say. They may have tips to help us work with Haven.
We really are very excited with all the ROHHAD symptoms that have reversed with the treatments. She is completely in panties now which is awesome. It's one of the biggest positives we can actually see. She doesn't have any accidents or anything. She never has the temperature issues - before she would sit and sweat for no reason.
They checked Haven's growth hormone at her last appointment and due to my medication didn't even think to ask her doctor. I will decide by tomorrow evening if I will be going to the appointment. If not I will email her doctor all of my questions and he can review them with Kris. Once I have the appointment set up with Kennedy Krieger I will update with what they want to do.