Tuesday, August 4, 2009

Sleep Deprivation

OK, so worry and anxiety had us up late.

Bennett didn't go to bed until after 11:00 PM, then up between 1:30 AM - 4:00 AM. Went to sleep. Seizures at around 6:00 AM. Back to sleep. Seizures again at around 8:00 AM. Then back to sleep again.

Wacky night. We are tired.

Of course, now a new problem to solve. Sleeping in his crib, I am in my upstairs office listening for him. The first thing I hear is a thwack of his face into the upper bar of the crib. Without making a sound he had woken up from the seizures, stood holding on to the sides of the crib, then thwacked his head into the crib.

No cry, no sound, no whimper, just thwack thwack until I ran in there.

Now, the crib needs to get the padding treatment, cause this is new behavior. Previously if seizures woke him up at night he would make sound while seated. Now, he doesn't.

Now he's downstairs with my Mom, she's in for the week to watch him because Jen's parents are on vacation. I should be working. I will be working soon. Hands are shaking, I'm nervous, anxious, unable to focus and need to purge. I'll get back on my work task in a second.

Responses to last night's Blog comments. I've been super shitty about acknowledging people's comments lately, and according to everything I read about Blog Etiquette, you should respond to people who leave comments. What do I know?

Cleveland Clinic is really good. I told you about some of it privately, but I will say again...they have thus far bent over backwards for Bennett. I feel good about him being there. I recommend them highly.

Thanks. Danielle is at a different hospital though. She's in Detroit.

That's what I keep telling people. I may not have an answer tomorrow or today or this week. The REVIEW is today, that's all. Who knows what will happen.

Thanks...yeah it did come fast, that's for sure.

I take Xanax every day now for my raging anxiety. I try not to take it until much later in the afternoon, but I may be taking it even before noon today. Just makes me groggy but it is the only thing that can handle my anxiety, which was bad before all this went down but is at maximum levels this year.

Well, aren't you the sweet one to check back in this morning! Thanks. Nah, very little sleep. Ugh...


  1. Foam swin noodles will become your best friends and Bennett's saving grace. Buy lots and pad everything.

    I'll be sending positive vibes to Cleveland Clinic today.

  2. So you don't need to be at the clinic for the review?

    Will they call you once they know something?

    Xanax, makes you groggy the first few weeks you take it, but after that it doesn't affect you much, at least it doesn't affect me.

    I take Xanax Xr 3mg, which is the strongest one there is, and the first few weeks I took it, I was sleeping all the time, after that, it does wonders for my anxiety, but it doesn't affect me any other way.

    Don't worry about Blog Etiquette, comment on what you want, or on what you have the time. We comment on your posts, not to get feedback, but to let you know that we're here for you, most of the time, the only way we can.

  3. I had never thought of foam swim noodles. Good idea!

    Ken, I hope the review goes well!

  4. I know you're going nuts waiting and worrying...and with a night like that...man.

    About the crib, I chose not to do the noodles because Austin like to chew on everything. I don't know about Bennett and oral stim, so it might work for y'all. Would definitely be easier than what we did. I bought a foam mattress pad, cut it to fit around the top rails, then used strips of fabric to wrap around it. It's held up since Oct or Nov. Austin also has a sleigh type crib, so not sure if the noodles would have worked for the front anyway.

    I used to never get sleep because of worrying he would get hurt. Every little sound he made I would run in there to check on him. Padding that has been a lifesaver. Honestly.

  5. Can I share Bennett's story (and your link) on my blog?

  6. By the way, I'm hoping that the conference goes well and that you won't need any extra "seizure proofing" tips, but just in case...
    My email is chadburnett@att.net.
    Feel free to email me if you have any questions about what I've done. I've padded, replaced, or modified a ton of stuff around here. You seem like a really creative type, so you might not even need any ideas...but, like I said, just in case.

  7. Trevy sleeps in a pack n' play...nice n' soft. Actually...we take it to the hospital with us. Creature comfort thing. Always makes for some spontaneous fun when the nursing staff starts buzzing over wether or not it's allowed!

    I'm sorry sweetie...the nights are worrisome anyway.

    But you're clever...I know you'll come up with something super.


  8. We got a mobi video monitor recently. It has a mode where it only kicks in when there is a sound or a movement. It's very sensitive. It is more likely to alert you than a monitor that is on in the background because it jumps to life when something changes. Check Amazon and walmart for it. Lifesaver.

    Hugs. Huge hugs. Invading your space hugs.

    Dear kens boss. Cut him some slack today.

  9. We have a video monitor we got from Target.Made by Summer.We love it and it gives sound and sight heads up when Zoey is stirring.Problem with Zoey ... she makes no sound so we rely heavily on the sight part.As for his little head ... hate that.I can picture that and wish that did not happen.Hope your hanging tight but not TOO tight waiting for news.Thoughts are with you.

  10. We used something similar to a swim noodle for Sophie's crib and then put fabric over it so she couldn't chew pieces off. The fabric was something that was actually made for the crib so your child wouldn't chew directly on the crib bar. But it didn't work. She would still get bloody lips. So she ended up in bed with us. That way, as soon as she stirred, I was right there to hold her. Unfortunately, she is still in our bed. Her nightly seizures started when she was 18 months old and didn't stop until surgery. Before that, she was a great sleeper.

  11. Oh and I had no idea that blog etiquette was to respond to comments...oops.

  12. If insomnia is wreaking havoc in your life and in spite of your consistent efforts you are unable to sleep at night, you should soon approach a doctor. After a thorough examination, your physician may prescribe sleep inducing medicines such as ambien or sonata. However these medicines should never be taken without a proper prescription from a doctor as they tend to yield side-effects which at times can be serious.


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