Monday, March 10, 2014

Weary

I think you all probably know by now that when I'm absent around these parts for long periods of time that most likely the reasoning behind it involves LOLA + SHIT + A FAN.  I hate hate HATE saying that "out loud" because I'm a firm believer that whatever I release to the universe through my thoughts and words ALLOWS it to happen... you know, that whole "Our lives are what our thoughts create" adage? Yep. And I don't want to imply that all our problems stem from Lola & all her "issues."  Nor do I want you to think that me bitching about all that is "wrong" means I'm not soooooo grateful that I was literally entrusted with living angels on earth because they are my WORLD, along with Scott & Cal.  I LOVE MY LIFE!!!  I hope & pray you all know that my family is my EVERYTHING & that is quite possibly the biggest understatement I've EVER made.

But it's been hard.  And trying.  And emotionally difficult.  And physically draining.  And the reason it's been hard is because sleep deprivation is a dirty little whore. I am weary.
I've written about this before too many times to count & I don't want to beat a dead horse here, but suffice it to say, I feel like I am literally half-assing nearly every area of my life due to this inability of my daughter to sleep at night. I am trying so hard to be strong, to be grateful for the few nights of overnight nursing I have per week, & to be chipper during the day, but it's been difficult. I am unsure how to function some days on 30 minutes of sleep a night. I feel old. I feel the toll this is taking on my body. I have gray hairs! My eyes have wrinkles & look puffy. Don't even get me started on these damn thighs/booty/saddlebags (the only thing on the planet I'm NOT half-assing! Haha!). I think I maxed out my cortisol levels like 3 years ago. If I find time to eat twice daily, it's a Christmas miracle. It's been a good decade or more since I cheerfully hopped out of bed ready to take on the day.  And you know what?  I can live with ALL THAT SHIT because I love my daughter so fiercely. But I want to fix this for her, & a little bit (selfishly) for me.  


I am back to researching things like a mofo, scouring the internet for sleep remedies/solutions, & searching for that one thing I hope I'm just missing that could solve this for my daughter. Hell, 3 days ago, I impulse bought an essential oil off of Amazon for like $43 which supposedly helps with "Peace & Calming."  I didn't even bat an eye at spending this kind of money for a 0.5 oz. bottle. ADD TO FUCKING CART. Seriously. I gotta help my girl!!! We are back to doing our regular craniosacral appointments after a month "break" due to our insanely crazy schedule with too many basketball games a week to count (GO SHOCKERS!!! 34-0!!!!!), which I LOVE!

Craniosacral with Daddy & Karen

I have been playing meditation music before bed, getting the dwarves into their badass therapy tub, & doing lavender baths. Mrs. Pocket is hittin' the magnesium, getting acupressure stimulation on points which help facilitate sleep, & last night she even got a vibrating back massage on her tight muscles associated with her kyphosis. We've also tried foot rubs with magnesium gel & the new snake oil (AKA "Peace & Calming" -- just wondering if I can ingest this shit?!?! 0.5 oz. may not be enough to zen my tired ass out though, dammit...), low lighting, bright lighting, no light, TV on, TV off, noise in the room, quiet in the room, singing, humming, motion, walking, swinging, bouncing, patting-till-my-arm-goes-numb, sitting up, laying on both sides, laying flat on her back, laying on her back with head elevated, laying on her tummy (don't judge, I'd have positioned her directly on her 4th metatarsophalangeal articulation for 27.6 sec out of every minute for 24 straight hours if that would remedy this insomnia clusterf*ck every. single. night. You have NOOOOOO idea!!! LOL), sleeping in the living room, sleeping in the bedroom, fan on, fan off, bath before bed, no bath before bed, meal right before bed, meal 1 hour before bed, meal 2 hours before bed, going to bed early, going to bed late, feeding homemade organic baby food, formula, bone broth, coconut water, filtered water, scotch & water (kidding, though others have suggested whiskey, but I cannot bear to liquor up my 9 lb. child...), organic baby food packets, Sleepytime Tea, melatonin, tart cherry juice, tryptophan, Rescue Remedy, B6, chiropractic visits, homeopathics, voodoo spells, prayers, begging, bribery, trickery, fuckery, consults with a medical medium, consults with higher powers, consults with every possible person I know & don't know on the planet, and more, to no avail. This chick o' mine is either a vampire or NOCTURNAL, yo.  So, aside from up & moving to Australia or buying her some tiny, fake fangs, I'm at a little bit of a loss...

We'll get back here... soon, love.

I won't give up.  I promise, baby girl.


xo

28 comments:

alison.mcknight said...

I feel your pain Gwen. Henry was the same and didn't sleep until he was about 15 ( he will be 20 this year and I haven't nearly caught up on the 24 hour shifts. I sincerely hope that the girls suddenly discover the joy of sleep and you get some rest. In the meantime I hope friends and neighbours can give you a couple of hours during the day so that you can go back to functioning Mombie state ( Mom+Zombie =Mombie :) )
love and hugs xxxx

Rachel said...

Aww, Gwen. I so understand. Wishing Lola, and you, some wonderful refreshing sleep.

Though the fangs would be fun.

Anonymous said...

Gwen, I can totally relate with you and your situation. My 2 year old was a horrible sleeper from the day he was born. I just thought he was a shitty sleeper for the first 6 months. He woke literally 15+ times a night. Every. Single. Night. When he was 10 months old on the verge of a nervous breakdown, I googled "medical reasons why my baby does not sleep." I came up with only three things. Maybe he had GERD? We tried switching formulas around and medication which did absolutely nothing. The last one was the furthest thing from my mind but we had to look into it. Maybe he had sleep apnea? We had a sleep study performed on him and holy crap.....he had severe obstructive sleep apnea. Severe! His adenoids were blocking off 80 to 90% of his nasal passages! He couldn't breathe! We had his adenoids out when he was 15 months old and his sleeping has improved so much. He might wake once a night now....maybe. I don't know if Lola could tolerate general anesthesia but have you considered a sleep study? I was floored getting my sons' report from his study. Maybe? Email me at kingston131@gmail.com if you have any questions. I feel for you mama!

Gwen said...

Thank you, Alison & Rachel. Xoxo

Anonymous - we cannot put her under anesthesia EVER - not even for a gtube placement, which is a relatively easy surgery. Nor for dental work - so even if sleep apnea were the issue, our hands are tied. I truly do wonder if that is going on? I am soooo glad you got answers... Wow. How scary. Hugs to you & thanks so much for writing. I am terrified to see how bad Lola would fail a sleep study. :/

Anonymous said...

as far as i know, sleep studies don't need to be done under anesthesia, even for really little kids. and there can be a lot of things going on besides adenoids that can cause sleep apnea, especially in someone with special needs. Also, I don't know if you have tried medication, but if it is so severe like you described, it might be worth it to look into. I would try to get your pediatrician to refer her to a sleep neurologist. good luck!!

Gwen said...

Anonymous -- yes, but the resulting surgery to remove adenoids & tonsils does require surgery & she cannot have that done. Not taking a chance of losing her.

We cannot use medication with her either, as even Tylenol & Benadryl make her seize. I tried an organic tea with her last week that was for sleep & she seized for 48 hours. I just am so limited on what I can do for her -- she is SO. SENSITIVE. Wish it were easier.

Aside from meds, which we cannot do, just not sure what options we have. Frustrating...

PS -- Lola has never been to a neuro before & we don't have any sleep neuros here in town. They told me they didn't need to see her unless I wanted help with meds, as there was "nothing they could do to help her otherwise." :(

Gwen said...

Anonymous -- I meant we don't have any PEDIATRIC sleep neurologists here in town. We do have neuros for adults who specialize in sleep disorders. Again, not sure if there are any options for us there or not -- that are non-invasive & would work for how sensitive our girl is. But I can certainly ask the girls' doctor if she thinks this would be a good idea! THANKS!!!

Anonymous said...

Hello Gwen!I really think it would be best if you got sleep study done. There could be problems you don't know about, and even if it does end up being something like sleep apnea, I'm sure there are alternatives besides full-blown surgery. Also, I find it odd that she seized only over a tea. Were there any strange ingredients in it, or ingredients that she is allergic to? If not, was more hot/cold than she is used to? Besides lights, I know allergies and temperature are big triggers in causing seizures, so it is good to ask yourself these questions.

I hope Lola is feeling better soon! I know this must be hard for you and her.

Gwen said...

Anonymous --

I am gonna ask her doctor about the sleep study. We will see what she says. Normally she says why test for something you can't do anything about... but maybe there IS something we CAN do something about? No clue.

Temperature is an issue for Lola - - regulating her own, I mean. She doesn't sweat & gets overheated easily, so we are constantly monitoring her for that. She runs like 96* normally, sometimes as low as 95* so even 98 is a temp for her & she does seize more when hot.

The tea - Lola is just SOOOO sensitive to new things. She has many food allergies. Not sure why she cannot tolerate so many things. She reacts badly to many new things like that. Seizes with Tylenol & Benadryl too, and they are supposedly super mild. Who knows??? Certain homeopathics even make her seize & they're all natural?!

Also is teething & had dental work done recently. Teeth are moving after getting a tooth pulled. And I fear she's fighting allergies, too at the moment - so all could be impacting it. But the only difference was THE TEA when she seized for 48 hours after drinking it. :(

Lights don't set her off?!

We do saline nebulizers with her & the infant mask is WAYYYYY too big for her & irritates the hell out of her when we do it. Like we cannot put it on her face. She is orally sensitive & sensitive to touch. Won't even let us touch her face at all without freaking out. So not sure how we'd use a C-PAP with her if that was the situation anyway. Anesthesia isn't an option for her whatsoever, so surgery to remove adenoids/tonsils is out. Ditto g-tube. She is just SO. SENSITIVE.

Remember, this is the child who wasn't supposed to live to 1 (Claire, too) -- and she is turning 8 in a month. I think she's still here because we avoided meds, to be honest. Just don't think her little body can process them at all. :(

PS -- No strange ingredients in the tea. Just organic tea ingredients like valerian root, chamomile, rose hips, etc. My chiro thinks she is lacking an enzyme to digest it...

Oh, and she drinks warm formula & eats cold organic blended fruits, so it wasn't a tea temperature that she reacted to...

She is doing OK -- sleeping 30 min. to 2 hours per night still, not all at once, and crying/fussing/miserable as long as the sun is down.

VAMPIRE, I tell ya! LOL THANKS for your concern & advice! I will DEFINITELY ask my dr about a sleep study & whether she feels that would benefit Lola. THANKS!

Anonymous said...

You know what, the fact that she sleeps better during the day and is fussy at night immediately makes me thing of Delayed Sleep-Phase Disorder. It basically means that your body is programmed to sleep later than most people. It's not very uncommon either, I actually have it myself. It can range in severity, to only being able sleep past midnight all the way to not being able to sleep at all when it is dark outside. Personally I can totally sleep anytime during the day, but at night I can't sleep at all until 2am or later.

Sorry if I'm repeating something you've already heard or looked into, but I wanted to say this just in case, y'know?

(PS. this is a TOTALLY random question, but have you talked to the facebook owner of Kayli's Krusade? She has a daughter with trisomy 18, and although her daughter does not have the same diagnosis as your daughters, she does have a lot of awesome resources for special needs kids, especially toys for sensory play and therapy apps and games for children with cortical vision impairment. You should check her out, if you haven't already :) )

Anonymous said...

I haven't read your whole blog so forgive me if this suggestion has come your way before but I imagine your family is qualified for social services due to the nature of the girl's disabilities. Have you considered overnight nurses to take care of your angels so you and hubby can have a routine of regular sleep? I know you and hubby are devoted to your girls but you need to take care of you too. I hope this suggestion does not infuriate you, I'm a well wisher who gains inspiration to deal with my stresses by seeing your strength, passion and commitment. xxoo

momsmom said...

How much does she sleep during the day? I wonder if she likes sunlight better? Maybe some artificial sunlight at night? What about a magic decoder ring with all the answers? Wishful thinking. I sure would give it to you if I had one.

Gwen said...

@momsmom -- It varies. A few hours tops, but usually not all at once. But every so often, she'll not sleep at all or sleep for 5 hours straight. So bizarre. Just wish I could trace this to SOMETHING. Lately it's varied due to seizures.

If you track down one of those rings, let me know. I'll take 6 of them. LOL HUGS to you & thanks for thinking of us!!!!

PS -- No clue about the sunlight piece? I thought about trying to do more time in the sun to try to reset her somehow... we'll see what happens.

Anonymous said...

First time i have read your blog and i love your honesty at how crap life can be! It gives me relief and i think it does to you too! Thank you!

The Dunup Doe said...

I just found your blog and have to say your family is gorgeous! The girls are like little fairies you see in watercolor paintings ( my fav kind) anywho, I have not read every comment above and know your life is not simple but obviously when a child cant tell you what is wrong it can still be something simple to adjust. Maybe something like the elevation a recliner would give, not just her head, plus side sleeping if she can might help. I can't sleep on one side for long because it gives me migraines( it shifts fluid that is in my ears and causes swelling, I have headaches all night) so i am constantly tossing, she may e having something similar. My migraines started around 6-7 years old and are very common in girls more than boys.

Gwen said...

@TheDunupDoe -- THANKS SO MUCH for the input! We'll figure it out. She is sleeping a little bit better, but I cannot trace that to anything at all. We have tried the reclining & side laying, to no avail. But SOMETHING must be off. Working with a sleep specialist who is going to come do some observations & hopefully offer insight. Also meeting with an orthopedic doctor from Children's Mercy in KC to possibly work on a brace for her back, in case that is causing her discomfort. Hoping SOME of this might help... time will tell. HUGS & thanks for the nice comment! <3

Kyle said...

maybe its hormones or something?? idk but a lot of kids have been starting puberty earlier like around 8-9 lately, so even though its pretty unlikely you never know it could be possible :/ I don't really know if it would be different for them because of their dwarfism, like are they ever gonna go thru that stuff or are they always gonna be the same? Either way if all else fails that could be a reason she's restless, you never know. i hope you family is doing okay and everybody is happy :)

Gwen said...

@Kyle -- I thought of that, too -- or cortisol (which she is under more stress due to not sleeping which causes seizures which causes more stress) -- but nothing really adds up. She slept 45 min. last night & then from 7:30-10:30 this morning. 3 straight hours -- I was soooo happy with that! (sad, but true!)

I have been checking out light therapy - - pretty compelling stuff. Have ordered a blue light for her & will try to get her outside or in front of the light for 30 min. during the day & see if that helps reset things internally. It's non-invasive & definitely worth a try...

THANKS!!!

PS -- NO CLUE what the girls are going to do regarding puberty/hormones. Claire is showing signs of pre-puberty -- not much, but some. And Lola is still the size of a newborn, so doubt that she will go thru it anytime soon. But we're always on the lookout! CRAZY STUFF!

Anonymous said...

Any new updates on sleep?

Gwen said...

@Anonymous -- She is really up & down with sleep still. I would say on average, she is sleeping 3-4 hours a night? So, better than 30 min. to 2 hours, but still not great. She has slept 7 hours 3 nights in the past 8 weeks or so. But it wasn't all at once. Even on the 3-4 hour nights, she still is sleeping in bursts -- like sleep 20 min., up 30 min., sleep 90 min., up an hour, sleep 5 min., up for 15, etc. It's so erratic still -- but I can't help but think that the light therapy we're doing is helping SOME. Hopefully... fingers crossed. Just wish she could sleep more. I do think she might be napping more during the day, too - - but usually wants to be held during these naps. :) Which I love doing, but isn't always 100% feasible! LOL We'll get it figured out... <3 THANK YOU for checking in!!!

Anonymous said...

my 42 year old daughter has had similar sleep problems since birth. I used to spend hours up at night with her. These days I give her melatonin and Xanax generic for sleep but it only lasts a few hours and sometimes doesn't work at all. We have found that music all night long or the tv set to the Arts channel (classical music, no commercials) keeps her relaxed at night even if she doesn't sleep. She loves the classical music and Italian tenors. But as to the sleep deprivation I can certainly feel your pain.

Anonymous said...

Valerian root and cannabis extract taken orally. I'm not kidding. Miracle plants.

Anonymous said...

Oh ooohhhh! Cannabis (CBD) is a massive stopper of seizures.

Gwen said...

Anonymous, unfortunately we live in Kansas & medical marijuana (and all forms of marijuana) are completely illegal. Trust me, I've been researching this for years now & my girls would have tried it by now otherwise. We are so rooted here, moving to CO to try it is not possible. Hoping KS gets its shit together ASAP so we can help our daughters & other kiddos like them. Keeping it illegal for MEDICINAL purposes is BULLSHIT in my opinion. THANKS!

Anonymous said...

Thanks for being open to even seeing such a suggestion. It's controversial... But what a medicine!! I'm really glad you've looked up the possibilities of cannabis. I very much hope the bullshit laws change in all the states soon. Most of all I hope Lola and yourself find some relief before hell freezes over. I send hoards of love to you and your family. I adore you guys... Such an inspiration for love and gratitude. :) Been a silent reader for a while with no balls to leave a comment before.

Gwen said...

Anonymous -- NO BALLS NEEDED! LOL Thanks for reading & for the input. I'm seriously hoping laws change SOON. Kids are dying daily without being given this chance. Just hope our government sees the value in legalizing this. It is working wonders for kids like ours! (not to mention in other diseases, too - it's amazing!) THANKS for the love & for following our fam! <3

Karen Watermelon said...

I'm Karen from Canada.. (Now living in Costa Rica). No need for anonymity. :) *Hand shake*

Christina Lawrence said...

Hi Gwen.. Although my Tiny has nowhere near the special angel wing feathers (the name I invented after being told roughly 236,978 times about my beautiful child's handicaps/disabilities/deficits/whateva-tha-FUQ Dr. Douchelord of that day told me Miss Thang had) Miss Thang Lola has, after 3 yrs of trying everything under the sun for me and her to sleep, you know what has helped? A FREAKING FAN. This tiny, personal size fan, tipped upward so it blows only half on her, and the rhythmic noise the hum of the motor makes on the nightstand next to us! Crazy, I know, but for Tiny 'Tude and her merry band of shitfits IT'S WORKING.

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