Here are a few of the highlights in progress:
I am working with our county's health department to organize a care conference for all our local providers...therapists, medical personnel, advocacy organizations (WSDS, HSDC - deaf/blind advocates) and the education team. There are approximately 15 people and it is important (imperative actually) that we get more coordinated and understanding of each group's goals for Maxwell. Additionally, I want to share information from the conference and the research on behavior issues and educational strategies.
I have lined up Maxwell with just about every specialist he has at Children's. It seems about every six months we are living at Children's for a week...so it's that time of year again. So in addition to his regular "check in" appointments, we also are meeting to discuss some new issues including higher than normal carbon dioxide levels, growth hormone treatment, brain structure, and vision change.
After his sleep study, it was determined he does need his tonsils and adenoids removed to help with his sleep apnea. If that doesn't make a significant difference, we may need to try the CPAP machine at night. This surgery will probably happen this fall, but we are still coordinating different specialists.
Max will have various procedures done at the same time of the T&A surgery to minimize anesthesia exposure.
- ENT will evaluate the status of his choanal atresia (his nasal passages).
- Another ENT will reconstruct part of his right ear. This first stage of the reconstruction is to help form a more "hearing aid friendly" ear.
- We are working to get some MRIs/brain scans done to evaluate his brain structure, semi-circular ear canals and the existence of the olfactory bulbs. (more on those issues later)
After learning more at the conference and talking with some families, I am considering an evaluation for Maxwell at Perkins School for the Blind in Massachusetts. They are the experts on CHARGE Syndrome and have helped many families truly understand their CHARGE child and give extremely valuable input on educational approaches and behavior strategies. Their team of experts will meet with Maxwell for several days and prepare a comprehensive report for us to share with our local educational and therapy providers.
THE HANDLE INSTITUTE
I am also exploring Handle, an alternative and non-drug approach for neurodevelopmental disorders and includes research and techniques from various disciplines. The expert comes to us, performs an initial evaluation and comes up a plan to assist with learning and behavior. This approach has been very successful with a few CHARGE families. The expert follows the individual's progress, is available for consult, and returns several more times for follow up work.