Ok, seriously. How in the world are we going to have a sleep study when Max refuses to sleep through the night? Once again, Max was up from 1am until at least 4am having his lil' night party.
Seriously, why in the world do our CHARGE kiddos insist on having night parties? Yes, I get that their neurological pathways are different, blah blah blah. But seriously, doesn't everyone enjoy a peaceful, lengthy good night's sleep?
So God, I have a few quick questions (complaints) for you about CHARGE Syndrome:
1) WHY do individuals with CHARGE Syndrome have exceptionally small feet when their balance is already so severely compromised?
2) WHY do they have abnormally shaped ears that have difficulty with hearing aids when most experience severe hearing loss?
3) WHY do they have night parties when their bodies (and their parents' bodies!) desperately need restorative sleep to deal with the lengthy list of challenges throughout the day?
Please get back to me soon so I can report your answers at the conference next week. Thank you. (And oh yes, I must compliment your work on blessing Max and all individuals with CHARGE an incredible determination to survive and thrive. It almost makes up for the above complaints/questions!)