Friday, December 7, 2012

isaiah 43:2-3

Robbie just fell asleep.

My time to rest and relax used to be once the kids were down for the night - always my boy last of all, because kindergarten exhausts Jocelyn and life as a baby with CP makes for an early bedtime for Zoe.

from stitch by stitch

I'm not sure anymore when my time to rest and relax is.

The highest risk time for seizures is the first two to three hours after he falls asleep. Because his tonsils are ginormous and probably should be removed (but we were waiting to get a bit more settled with Zoe first), he wakes up a few times a night. Each time he falls asleep again? Yep, it restarts the two to three hour high-risk period for a seizure.

I can't do think every time, but last night - as Lee tended to our little four-year-old friend who is crashing here for a few days and who has a stomach bug - I decided to just crawl into bed with Robbie and monitor him that way.

But I've resolved one thing.

Fear sucks.

So I'm not giving into it. Because you know what? I knew SIDS was a possibility with each baby of ours, but I didn't totally freak out about it. I took some precautions, I trusted God, and I slept as much as the precious babes allows.

And you know what else? I know SUDEP is a possibility. (That would be Sudden Unexplained Death in EPilepsy.) But we're not going to totally freak out about it. We'll take precautions, we're trusting God, and guess what? We're sleeping as much as we can, with a baby monitor at full volume and a seizure monitor that we'll be ordering soon.

from Shine Design
God'll be up all night, so I'm trusting Him in this and in all other things.



  1. Psalm 127:2 ...for He grants sleep to those He loves. (seriously, that's in The book. Look it up if you don't believe me!)

    1. Yep, that's a favorite one of mine. A friend (Jenelle) who sometimes struggles with insomnia shared it with me several years ago. I clung to it when we were awaiting news about Zoe's adoption, because I knew the news would come in the middle of the night and it was hard to sleep. <3

  2. Psalm 121
    1 I lift up my eyes to the mountains—
    where does my help come from?
    2 My help comes from the Lord,
    the Maker of heaven and earth.
    3 He will not let your foot slip—
    he who watches over you will not slumber;
    4 indeed, he who watches over Israel
    will neither slumber nor sleep.
    5 The Lord watches over you—
    the Lord is your shade at your right hand;
    6 the sun will not harm you by day,
    nor the moon by night.
    7 The Lord will keep you from all harm—
    he will watch over your life;
    8 the Lord will watch over your coming and going
    both now and forevermore.

    God is up all night, so you don't have to be. :) (not that falling asleep is easy when you're worrying, of course, but sometimes it's helpful to remember that He never sleeps and nothing happens without Him meaning it to)

    1. My struggle is that our sovereign God, who I love and who loves me, does allow and even cause the rough things (see Exodus 4:11 for his causation in disability). I don't want my boy - whether he's conscious or not - to have a seizure without me there beside him, especially as it ends and he feels scared. So while I trust God and while I know that nothing happens without His intention for it to happen, I still want to be there when the next seizure happens. I am asking God to allow that to be the case, but sleep is still hard to come by as we wait for the next one.

      Does that make sense, or is this just crazy tired talk I'm spouting? ;)

  3. Would love to talk more soon. Especially about which monitor you are ordering. Been researching them all day. This wasn't our first seizure "rodeo" but it was our first time she had difficulty breathing and was unresponsive. I never heard of SUDEP until today when I was looking for monitors. Kind of has me freaked out as I just put her to bed and I'm running on one hour of sleep and want to crash but my mind is racing. The neuro team thinks they don't work that great. Waiting to talk to our regular neuro and get her opinion. Either way, I have to do something. The "what if's" my husband hadn't found her can send me into a panic attack. Trying not to go there. I know He has her in His hands but I know I will rest better knowing I've done everything I can to keep her safe.

    1. Yes, SUDEP is a real thing, but it's not very common which is why monitors aren't covered by any insurance plans. I know what you mean about being freaked out at night. We have a baby monitor with the volume turned up as high as it goes, and we have a video monitor that I wake up to check more times than I'd like to admit. It makes it bearable to sleep, and yet tonight, I'll probably sleep in Robbie's bed because he's running a fever and his neurologist says his risk for seizures goes waaaaaaay up with a fever. I totally get the "what ifs" - they drive me nuts too.

      It's the Emfit one that other moms have recommended from the special needs groups I'm connected with from our disability ministry. Here's the link: I've been told that if you mention the Danny Did foundation when ordering, you get 10% off, and the Danny Did organization provides monitors for families in need too. Here's more info on that: (Don't freak out reading their site, though. The foundation started because Danny - the founders' son - died from SUDEP. Remember, it's super rare, and the what ifs will drive you NUTS!) We haven't ordered ours yet, but we will be after the EEG this week, assuming it confirms that results of the previous EEG. I'll keep you posted!

      (And message or email ANYTIME!!! Seriously.)


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