Tomorrow we will be meeting one of Haven's doctors and having a full review of everything "Haven". I have copies of all of her latest work and labs for this doctor.
We will be moving asap towards another Oncologist and setting up for the year of chemo treatments - will be nice to have them on the calendar instead of figuring out when the next one is. We have at least one or two more surgeries coming up. If one of the surgeries is soon I will push to have it after school is out in June. She is doing amazing at this school and to her it would be a punishment if she had to be out for a week or two.
I have been in contact with people about a Pulmonary doctor and getting her next sleep study. I tell you I can definitely give you the results at home!!! I just bought a mega ton humidifier for her room - it helps a bit but I need a Pulmonary doctor to check her CPAP machine and get her working on it.
Endocrine will be the more difficult doctor - they do not have one for children in St. George. So we will have to travel to Salt Lake City for this for each appointment.
Primary Childrens Hospital. Which is the children's hospital for Utah, Idaho, Wyoming, Nevada, and Montana.
We have a few other ROHHAD patients attending this hospital and one is undergoing part of Haven's treatments for ROHHAD.
I will be happy to get with an Oncologist regarding her IVIG and hope Haven can fully recover in the next year or so.
I will know more tomorrow and hopefully be able to give a clear update on Haven...right now we've just been doing little bits. I will get with the other parents using SLC and find out who their doctors are. Maybe even plan a visit with these other children!!!
Until I know more........................