Gearing up for a manic Monday

Thank goodness Daddy has Monday off because it is going to be a crazy one. 

Monday morning, Hannah has an appointment with the audiologist and then her ENT doctor, Dr. Larrier. Originally, it was scheduled a couple of months ago just as a follow up for her ear infection, but now it is going to end up being a bit more in depth because of Hannah’s breathing issues, which Dr. B., Hannah’s pediatrician, attributes to airway issues.

Hannah’s lungs have always sounded clear when we have any appointments (minimum of one a month), so we know that she has never had any aspiration pneumonia or anything. We also know that she has had laryngomalacia in the past, and we also know that swallow/breathing issues are one of the symptoms of her disease.

I admit I’m a bit nervous as to what she is going to tell us, but I know that we “need to know.”  We aren’t anywhere near needing a tracheostomy or anything like that yet, I don’t think, since 99% of the time Hannah has no breathing issues at all (outside of getting out of breath when exerting herself a lot).   Keeping my fingers crossed.

Then after those two appointments, we head downtown to meet with Dr. Ondo, the associate director of Baylor Universities Parkinson’s Disease Clinic.  

• My “hope” is that he will do an evaluation of Hannah and her symptoms as an evaluation for Parkinson’s disease to see if there are truly any commonalities.
• My”dream” is that he would be enthusiastic to learn more about the PD and GD connection and get involved with this type of research with me and the others who I am working with. 
• My “fear” is that we leave there with even less of a connection between PD and GD — but, if that is the case, at least I will know!

And that is just the beginning of the week.  We still have dev therapy, physical therapy, occupational therapy, an orthotics check, a rescheduled Cerezyme appointment, and my mom coming into town to get ready to take the kids to California while we prepare to leave for the NIH…NEXT WEEK!