Last night we decided to bring the boys to Wednesday night church for maybe only the second time ever. We were instructed to give Elijah only a few hours of sleep for this morning's test, in which he was to be completely sleep-deprived. Typically we have him in bed by 6-6:30p because that is the only way we can keep him even mildly rested. Last night we had the freedom to actually get out of the house in the evening as a family! We put E to bed late, at almost 11:00p (SO late for him!), and woke him up at 4:00a.
If you've been reading our blog for a while, you might remember that 2011 almost broke me. That was the year of Elijah's third open heart surgery. My worries surrounding that (not Elijah's fault AT ALL....my own issues completely), combined with a horrible work situation (and ultimately the loss of my job), led to major anxiety and sleep-deprivation...which led to all sorts of physical and mental struggles.
Last night as I was trying to fall asleep, I felt an anxiety creep into my insides that I hadn't felt since that dark time. I felt that hopeless, anxious, unsettling feeling trying to make its way back into my bones. This new neurological concern for Elijah is so scary for me. It is uncharted territory that I honestly want nothing to do with. I kept thinking over and over last night...aren't heart/hearing/everything-else issues plenty? Hasn't he been through enough?!
Dan graciously offered to bring Elijah to the EEG testing at Children's this morning. I was kind of a wreck about it, and my husband is so good about knowing when to step in and just do things. Sammy and I waved goodbye as they literally drove off into a blizzard, making me even more anxious. I spent my morning worrying, allowing myself to visit very dark places and doing a lot of crying. Thanks to two of my very cherished friends, I was able to pull myself out of the madness. Heather and Sarah, THANK YOU! You two saved me today.
Sarah told me, "Megan, STOP! Go look into a mirror. Tell the devil to go away and think of how much God loves Elijah. You cannot let your mind go to that bad place." I thought, Oh my goodness, she is so right. What am I doing? So I did what she said and I was able to turn it around. And I've literally been thanking Jesus for it all day. Over and over...times a thousand. I refuse to go back to that very bad place I was at in 2011. No thank you, not going back there.
Ok, so news from E's appointments today.. the EEG went fine. Elijah was even able to fall asleep for a bit, which they prefer. We won't get those results for about a week, as his pediatrician and neurologist both need to review the results.
The sleep appointment went ok, as well. Dan said that Dr. W had an idea for a med that might help Elijah sleep better, after hearing that the Valium helped him with sleep (possibly) and behavior (for sure). A lot of things depend on...uh, well, so many other things. We have so many appointments coming up and we are looking forward to acquiring valuable opinions/info from a handful of different smart doctors. We don't want to medicate E or make major decisions until we gather more info and do more testing.
The sleep doc thought that the EEG and getting thoughts from neuro was a really great place to start. Baby steps! Our next step is ENT on Monday. I'm curious to know what the hearing test will reveal, as Elijah keeps insisting that he can hear "something" out of his left ear (??). I am also hoping that Dr. L will agree that it's best for E to go back to school on a part-time basis to start with. We do not feel he can handle full days at this point.
Tomorrow we will attend a funeral for Dan's precious, kind grandmother, who passed away on Sunday of this week. She was an amazing woman who loved Jesus. It is sad to say goodbye, but we are so happy to know where she is right now.
Thank you all so much for checking in and for the prayers! xo