Baby Steps

Monday, October 22, 2012

Sleep seems like a very distant memory. 14 months of sleep deprivation is really catching up with us. We feel like we have a newborn again and we are back to taking turns getting up with her. Piper has never been a good sleeper at night, she did sleep quite a bit during the day for a few months when she was little. Since we took her off phenobarbitial we have seen the least amount of sleep so far. We have been working on finally getting her on a schedule in hopes that she will sleep better. So far it hasn't helped much. We are also trying to get her to sleep in her crib in her room. On a good night she will sleep 4-6 hours not consecutively. She falls asleep easily but wakes after 3-4 hours and cries for 2-3 until she wears herself out again. We have tried sleep aids which help her fall asleep but don't help her stay asleep.

She has screaming meltdowns all day now and it's probably from being so tired. It's affecting her therapy sessions and we usually leave early because she is too tired.

We are doing a sleep study this evening and they need atleast 6 hours of sleep to get the data they need. Piper and I will go in at 7 and be released at 5:30am. If they don't get enough data we will have to repeat the study. She is not allowed to be held while we are doing the study so it should be interesting. I foresee a long night for both of us.

On a more positive note she is smiling an laughing a lot more. Justin can really make her giggle. It's awesome to see her so happy.


  1. I am so sorry! Praying it gets better. Have you tried melatonin? Clonidine may help but I am not sure how old she would need to be for that one. Praying she sleeps tonight!

  2. So for what it's worth... give it a bit, to see if things settle-out, but if she needs something to sleep - In my view, it's worth it, and you shouldn't feel bad about it if you think you need to do it. For her and for you.

    Evs has been through several points in her life where sleep was hard to come by (0-9mths, and again around Piper's age). We never liked the idea of giving her anything to help her sleep, and fought the idea for a good while, even when (strongly) recommended by her Neuro - seemed like "we were drugging her"; what have you. But at the end of it - she has enough to deal with. She has seizures, and Lamictal is a great drug for those, but it gives her some wicked insomnia. If she's up all night, we were unable to be our best for her (whether that's just "play with her", "go to work to pay for life & insurance", or what have you), and frankly - so was she. She'd be dozy/loopy/not wanting to engage as much.

    So, we do clonodine & melatonin. She gets a good night's sleep, every night, which makes her ready (most days) to "do life" - and us, too. And we consistently try to dial it back, but it seems as though we always hit the "insomnia-inducing level" at some point.