Update on the Seizure Watch

Well several of you have written to see just how the seizure watch is going.

It’s going.

Haha!

There are some kinks that we have yet to figure out.

For one, it is very sensitive and if bumped on one of the side buttons, it can easily roll to another mode, which would render the seizure mode nonfunctioning.  Well, obviously, that’s not good.  It did this the first night.

The second night it did the same thing.  IMG_1755

I was going to try to make a small, kinda snug “sleeve” with elastic on each end to keep snug over the watch so the sides could not be bumped easily, but my sewing machine is broken.  Savannah suggested the elasticy upper of a sock, which I did immediately. That helped, sort of, but she can wiggle the sock off of it…so I still think a little double-ended elastic sleeve would work better.

Another kink is that if Ruby does her usual dance party in the night, she thrusts her arms so rhythmically that the watch thinks it’s seizure activity and alarms.  The first night I slept through it.  (Told ya’ I was a little weary.)

The next morning I tried to find a different text tone that would rouse this mama and while searching realized that if the one I’d been using hadn’t worked, neither would any of the others.  So I finally found and downloaded the little sing-songy quip from Despicable Me 2, “You love her, You love her, You really, really love her.”   I thought that was appropriate for Ruby and it does seem to usually wake me, emphasis on “usually”.

The other kink is that if the watch sends a seizure alarm to my phone, I can easily check on the baby monitor and see her partying.  However, I have to go in there and reset the watch in order for the seizure function to be operable again.IMG_1764

One night I woke, and could hear her from our bedroom (I actually can every night), which mind you, is on the opposite side of the house.  I looked at her on the baby monitor and she had her head raised, staring at the eye of the monitor loudly calling, “Mom!?  Mom!? Mom!?”  It made me giggle.  That chick.  She misses her mama.   And she definitely knows that the monitor is there and I am watching.  Seriously!! She is so smart!

So overall, what’s the verdict?

Well we’re praying that we can figure out how to resolve the kinks…

FullSizeRender

But one thing I know… the hours of true sleep that I have gotten have been like a drop of water in the Arizona desert….more than grateful for every single one of them. 

14 thoughts on “Update on the Seizure Watch

  1. Sooo glad for the sleep! and the One who doesn’t sleep took care of her those nights it didn’t work.
    So fun though that the watch thinks partying in the night is an unusual activity! 😉
    Hope you can find a way to tell it what you really want it to do.
    Hugs,
    Sandy in the UK

  2. Praying you can get the kinks worked out soon so that those drops of rain in the desert turn into a full-blown steady shower!!

    Might be a silly question, but do you have any night shift nurse friends who might be interested in staying with/watching Ruby occasionally on a night off? Just thinking outside the box…

    Continued prayers for restorative sleep for you, sweet friend!!

  3. I know how desperately tired mothers of special needs kids can get. When my son with autism was young he slept very little and I was nearly psychotic from lack of sleep and stress. Does Ruby get services from Regional Center? If yes, can you use some respite hours to get a night of uninterrupted sleep? Also perhaps you can put out a call for some help on the overnight shift. Years ago a family in our church had a brain injured son and a call went out to the congregation looking for people to spend the night a few times a week to allow the frazzled parents some rest. I was much younger and volunteered sometimes to watch their son while they slept, and I ended up doing homework or watching movies. Can’t hurt to ask..often people want to help but just are waiting for the opportunity to present itself. Prayers for restorative rest for you all!

  4. You know, I used to be a DDD Pediatric Respite Care RN.
    Of course, I have no idea after you have added your Gems to your family, what they do and don’t qualify for in the State of AZ and according to your health insurance. It is an idea you can consider, even if you would just want, perhaps, a CNA to watch her for seizure activity and wake you immediately, rather than a nurse (as I was trained to do all the needed seizure interventions – but Ruby IS different in the severity of her seizures).
    It does make a difference, for us, when my grandson’s Direct Service Provider comes for 2 -4 hrs. a couple days a week, just to play with him, or take him to the park etc… He is only at school 2 1/2hrs/day and has to have constant supervision. (Autism) His mom and I have been through huge health trials this year, so to just have that time you can totally relax for a couple hours, REALLY SLEEP (for us a nap), i we KNOW helps. We stagger our night sleep times so I am on the late night schedule, and mom is on the early morning schedule; however, it depends on everyone’s health that day too.
    I would think that might be a service provided at night for a “partial night” sleeper, possibly 3 – 4 nights/wk.
    Is Birdie sleeping in there yet? Thanks for the update. You all are always in my prayers.
    P.S. We found with Tristan that he was missing an enzyme from his body that detoxes the brain and immune system, It’s called an MTHFR genetic mutation. He had it on both his X and Y chromosome, so it deleted that enzyme. Now he takes 5-MTHF orally, and is able to detox now with methyfolate B-12. I know you use YL essential oils. We did the Zyto scan with Tristan, and the scan revealed he needed Valerian, but he had the OPPOSITE effect that valerian, melatonin and lavender should have in his sleep disturbance problems. His neurologist with PCH, could follow the metabolic cycles that start with the 5-MTHF, and see, from that opposite reaction, that he needed 5-HTP. He now asks to go to bed when he’s tired, falls asleep, and STAYS asleep all night long. Kids with brain injuries are so complex. The Ped Neuro MD treats him all naturopathically, and we were already using the essential oils she was going to recommend! PTL
    You can find info on this genetic mutation at http://www.seekinghealth.com
    This all, of course, if her wonderful neurologist hasn’t already done this genetic test. Sometimes the simplest little something can cure a whole metabolic cycle cascade of dysfunctions. His MEDICAL diagnosis is Chronic Autoimmune Encephalopathy, PANDAS/PANS, and the genetic missing enzyme. He has multiple allergies and food sensitivities, and is immune compromised, which is the gut part of the encephalopathy.
    O.K. enough said. Abundant Blessings and Peace Upon You and Your Family!

  5. Praise God for sleep! I know He will show you how to work out the wrinkles. I don’t know about the watch’s programming but is there any way that Graham could “hack” the creation of a remote-reset option so that you didn’t have to go in there?

    Thank you so much for sharing this idea with all of your readers, too! It has gotten our family brainstorming about monitoring options for our daughter. Right now, her room is literally completely empty save for a toddler mattress on the floor, a blanket, and two soft dolls. We remove all of the toys and other things at bedtime for safety. By a few months after coming home, she had either destroyed or proven to be a safety hazard EVERY SINGLE other item in the room. (One of the scariest was when she appeared at the breakfast table with a straight pin lodged in her mouth–apparently completely unbothered by it!! The home’s previous owner did a lot of sewing, and we figure the pin must have worked its way into the carpet, somehow not been removed by the professional steam cleaning, and then she found it and dug it out and OOOH SHINY delicious! Arrrgh!) Our occupational therapy team has come up with a great “sensory area” design, but we’re struggling to get it implemented and still have her actually SLEEP or at least stay quiet enough that the rest of the family can!

  6. Hi Linny, I was reading the comments above, and Piper and Cheryl’s comments about having someone watch Ruby for you, gives me an idea. Perhaps the seizure watch can be set up where the live video is connected to a monitor in a hospital room (or somewhere similar), and in that hospital room there are several monitors from different places and the night nurse keeps an eye on them (like a security guard sits in a room and watches several monitors in hotels). So the night nurse will be alerted by the seizure alarm and check the monitor for you, at their place, instead of coming to your place to watch for you. A live remote connection. I have a monitor cam that is connected to my iphone so I can check on my father in law that he is safe while I am out and about. Something similar to this. Just a thought. Perhaps it was already thought of 🙂 Hope it’ll all be solved soon and you get a lot of decent sleep to catch up! 🙂

  7. I work on call for an agency that Needs immediate response time. If I’m extra tired and think I may sleep through my phone, I turn the vibration on and put it under my pillow and even if I sleep through the ring, the vibration wakes me up.

  8. I’m hoping that you’ve gotten any issues with the seizure monitor figured out by now and that you’re getting some much needed sleep at night but just in case you haven’t, I wanted to share this with you. It’s designed to monitor sleep patterns and may be able to act as a seizure monitor: https://www.engadget.com/2017/01/31/raybaby/

    1. Thank you Amber! The seizure watch is working great! Our little stink bug actually knows how to set it off! She’s really funny and a total prankster!She grins from ear to ear when she does it!! Thank you for the info though!! I may need to pass it on to someone else!

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