Justin crawled into bed with Boogie yesterday morning (and when I say "morning" I'm talking about her getting up at 3am is her typical time) so I could try and get an extra hour or two of sleep. Last night when she woke me up by hollering and pounding her feet on the floor at 4am, I figured it was my turned, and I crawled into bed with her so Justin could sleep a bit more.
Note: us crawling into her twin-sized bed is not ... I repeat NOT ... a normal thing for us, but at this point, we are getting desperate and will do anything for some sleep! :s
So from 4-5:30am Jocelyn whined and pushed against me because she wanted to roll around and off the bed onto the floor because "down there" she can be the loudest. I can not believe how hard she could push on me! Really kid? Trust me, I don't want to sleep next to you either! She finally got worn down and fell back asleep around 5:30-6am (which is when we should be getting up!).
Justin and I have tried nearly everything over the last two years to get Jocelyn to sleep through the night. We've went from changing the time we put her to bed, changing her beds, shorter naps, changing her meals times, warm baths, story time and cuddles prior to being put in bed, we use a noise maker, keep her room cool, keep stimulation before bed to a minimum and those are only the tip of the iceberg!
Oh, and don't think we cater to Jocelyn whenever she makes any type of ruckus because we don't. We've done the whole "let her cry it out ignoring her thing" and that hasn't worked for years now!
We will attempt a new tactic for a few weeks and when it doesn't work, we try something different. Up to this point I feel like we've been optimistic, but I am totally fed up with not having a decent nights sleep. All I'm asking for is about 5 hours of uninterrupted sleep ... that's it! I don't think that's being unreasonable?! I've definitely "put my time in" and now ready to have some normalcy (whatever that is??).
I have no problem getting up early. In fact, I love getting up at 5am to work out and get my day started bright and early, but not when I don't sleep but 3 hours or so at a time.
The time has now come when Justin and I are both so thoroughly exhausted that we are considering that maybe she might require a medication to help her stay asleep. For the most part she goes to sleep fairly well ... mostly ... but the sleeping past 4 hours virtually never happens.
So yesterday, I decided to call Jocelyn's primary physician and informed them that we have to do something. All three of us need sleep and if Jocelyn can't do anything most of the day because she's too tired, then how are we ever going to make gains in all the areas that she needs? I am starting to think its because of her brain injury?
Apparently my attempts were futile as the doctor's reply was "well it looks like she has you wrapped around her finger ... I have no recommendations but to keep trying."
WHAT?!?!
I don't think he is understanding the gravity of the situation here!
In the beginning I could do no sleep, and when you have a baby, you should expect that. But now that we are almost going on Jocelyn being 3 years-old, somethings gotta give!
Right now we still have connections with the special care unit at Children's Mercy and perhaps they will have some suggestions on what we can give Jocelyn in regards to medication. I know several people try melatonin with their kids but with all of Boogies health issues and so forth, I don't want to just take a stab in the dark and go off trying whatever. Normally I would, but if I made things worse or God forbid if something else happened in our already chaotic world, I would feel terrible.
So here the hubby and I remain ... sleepless in Tecumseh ... and growing more and more tired as the day/nights pass. I will keep hoping that we will find something, whether its a medication or some miraculous non-pharmacological approach that will help us all to get the much needed sleep we need.
Until then, we will continue to sneak-in naps whenever possible.
Perhaps this is just the passage of parenthood and everyone goes this long without sleep? If this is the case, then all you parents that have kids that are grown and gone ... God Bless You!!
For the rest of us that are in the midst of downing ungodly amounts of caffeine, covering our blackened raccoon eyes, have extra weight on our bones and constantly fighting our uncontrollable urge to take our irritability out on whoever is in our presence ... just know this mama is right there with you!!! We all will survive ... right??!!??
When my daughter's primary doctor wouldn't listen to me, I got a new primary, and the help she needed. I wish I could give that doc a piece of my mind, maybe two. You are right! You all 3 need rest, and the doc shouldn't have blown you off like that. Tina
ReplyDeleteSometimes I want a new primary and sometimes I REALLY think we need one. Him and his organization have good attributes as well though...aka they help us to get equipment we need and do it quickly! But if he would've just given it a little bit of extra thought...hell, even google brain injury/cp patients and sleep...he would've found how common this is and offer us some suggestions!!! He really disappointed me on this one!!
DeleteI have to admit, normally I would agree with your doctor. (I have heard way too many people talk about how their kids don't sleep through the night, but in the same breath they admit to all kinds of coddling behavior.) But in your case, I KNOW that isn't the issue. I am sure by this point you roll over in bed most mornings in denial and pretend you don't hear her for a while. (Boy, do I remember those days... And will be remembering all too well next week!)
ReplyDeleteI am surprised that your primary doc would even say this. Doesn't he know you guys have been around the block a time or two and aren't just taking the "easy way out" or something???! I mean really. Plus, with all Jocie's other issues, her sleeping might be rolled into that. And like you said, none of you can focus on helping her keep moving forward if you are constantly feeling like zombies!
I hope you can find a solution soon. I have NO idea how you have made it this long!!! You have much more strength and patience than I could ever hope for.
I am wondering angie Has this always been an issue. I do attendent care for a young man with a brain injury who is on the same level as J emotionally. Reading your story reminds me of the things I hear from his brother( we're friends so I started doing this to give him a break) on a regular basis. I've seen it myself when he stays with me overnight and I am telling you NOTHING and I MEAN nothing works we've tried it. You can't knock him out with meds and if you don't keep him contained in a safe space he can cause massive damage and or get hurt cause he has no fear and full size. Once with a respite guy, who feel asleep he set the a dishtowel on fire.... yeah that was a fun call, his dr has repeatedly told us both that its the parts of his brain that are damaged and he's often got a messed up sleep cycle. The way a new baby would. Except his is broken not just confused. It sounds to me like the way Joceclyn's CP affects her might also be messing with her, and by extension yours and her dad's sleep.
ReplyDeleteI don't really have any suggestions for you. If you lived near me , she could hang out with us, so you could at least get some sleep. :D Is it not possible to get some overnight help in your home even every once and while would help. I suspect in my non medical opinion it's nothing you are or are not doing and she can't help it if it is an affect of her CP.
Hey! I just got to read your comment. Pretty much got our issues addressed and starting some melatonin. Apparently this is VERY COMMON in head trauma people and especially from being hypoxic :s
DeleteHoping it works and yes, right now, I'm extremely grateful she's small and not destructive. All the more reason to work feverishly to get this under control (if possible) NOW!!!!
PS - wish we lived closer too...it'd be nice to meet! :)