I guess I should back up a bit; Claire has been struggeling with sleep issues for years now. The highlights:
-3 1/2 years old, sleep issues begin, never seems to fall into a deep sleep, she is up every two hours, all over the house...
-4 years old, tonsils and adenoids removed (didn't help with sleep issues)
-5 years old, Pediatrician blames sleep issue on "people with down syndrome are suborn", "don't try so hard", "she is playing with you just like a toddle getting out of bed would"
-Tossing and turning all night, up on a regular scheduled 12, 2, 4, 5, 6,7 Ahhhhhhhhhh!
-Went in for a sleep study, yes she is having "episodes" AKA, sleep apnea, her air way is being blocked off by its own tissue, she stops breathing and that wakes her up. Also her brain just stops telling her body to breath for a while which wakes her up (it's about 50/50).
-Nate and I agree, we want to TRY the breathing therapy because it's the only option, CPAP (Continuous positive airway pressure) or nothing.
-Feeling exhausted, desperate and frustrated that our doctors seems to be blaming down syndrome for something it is not, a sleep disorder, like just deal with it, it's part of the package: stubborn and sleep deprived.
-January, Claire does a second sleep study to determine the air pressure setting her machine will need to be on to keep her air way open. It was a little tricky because they don't make masks for people with the head size of a two year old. After struggling through the study with a mask that didn't really work we discovered Claire could uses an adult medium nose mask over her mouth and nose (she is a total mouth breather). It's not totally perfect but it's helping and does't leak too often.
The amazing news is this, Claire's "episodes" have gone way down. At her sleep study she stopped breathing 18 times an hour, crazy! Over the last month and a half on CPAP she has been having, on average, 4 episodes! No wonder she is doing better. Her doctor is hopeful that she will get that number down to 2 by the next visit. Sense starting the CPAP she has made less than five trips out of her room total in the middle of the night. She was averaging 3-6 trips to my room each night before. Basically, she was waking up and getting out of bed before, now she is still waking up some but she goes back to sleep, praise God! Claire will most likely need CPAP for the rest of her life because of her facial features I am overjoyed that she is going so well. She is tolerating what most of us would find torturous even with down syndrome (there excuse, not mine) okay now I'm saying it, I told you so docs!