|Lots of wires!|
We both suspected that Luella would not sleep well being all hooked up to 30 some wires but she surprised us by having one her best nights of sleep... EVER! We use a sleep app on a smart phone at home to measure the percentage of Luella's deep sleep each night. At home she averages less than 40%. Last night during the sleep study it was at 82%!! What a little stinker! We have NEVER seen anything higher than 50%. Luella did have one brief awake time around 4:30 and then they came in to end the sleep study at 6:00. Luella was very happy to get all of the wires unhooked! It was so easy to wash her hair. She loved that I could lower the shower to just her height! She didn't want to get out! :-)
While it was unfortunate that the doctor could not see Luella's normal sleep pattern, we had a nice conversation with him and he has a great plan for helping us get Luella sleeping better. It was nice seeing a sleep specialist at Gillette since he has seen several Dravet patients and knows what we are dealing with. He was even a speaker at the Dravet conference four years ago!
The EEG portion of Luella's study will be reviewed by her neurologist and we will talk about it in a few weeks when we go back for a routine neurology appointment. We will also see an orthopedic doctor then and check back with the sleep specialist too.
Thanks for all your thoughts and prayers. I think all those prayers made Luella sleep too well!! Maybe we need to ask for those prayers EVERY night!! :-)
Below are a few more pictures...
|Getting things started.|
|Adding more leads for the EEG.|
|Wires from head to toes!|
|All ready for bed!|
|Tucked in and ready for sleep!|
|Not thrilled with a 6am wake up call but not complaining since all the "stuff" was coming off!|
|Some wild hair!|
|So glad to be free of all the wires!|
|Celebrating with a donut with sprinkles!!|