Why is she not sleeping? | Insomnia and CdLS

In this video we talk about how Cornelia de Lange Syndrome affects Freya’s sleep. She frequently wakes 1-2 times during the night and often needs melatonin to help her sleep.

[@whatsupdoc5861]

Ahhh Marcie , you are so patient and kind . 😊

[@dianeferguson1074]

Oh my goodness! She looks so much like you, both so beautiful!

[@lisarhodes3206]

I don't blame you for not giving her Benadryl on a school day, especially. My Gosh! I'm a grown woman and Benadryl knocks me out for a whole day! And it makes me really grouchy! I understand where the Dr is coming from but I hate to see the precious little thing feeling drowsy during her school day! You did the right thing as always! You are such a good Mom Marcie! Hopefully you will find a solution for her sleep problems. I know it must be exhausting!!! Hugs to you all! And an extra big hug to Freya!!!❤❤❤🙏🙏🙏❤❤❤

[@sallymoore7415]

How lucky Freya is to have such lovely siblings! What a wonderful family you are❤

[@kimtongo3533]

You are so humerus talking about Freya’s sleep!!!!!!🧡💚💚🧡

[@Bindismom]

I think every parent can relate to this one. We raised 5 children….5 in 7 years so it was more like a “ pod” of kids!😄 The one thing that was REALLY REALLY hard to deal with over anything else was loss of sleep! Kids rally around it just fine but the parents just drag and muddle through. You do so well with all you are given. Having a loving, helpful partner makes most of the difference, don’t you think? At least it did for me and my heart goes out to all single parents because their struggle is so much harder. Hugs to all. 🤗👍👍💖🙏🙏

[@Freyasluckyarm]

It definitely does

[@mtrevino3993]

Freya’s smile truly brightens my day! 😊

[@tracethomasvickers2224]

You and Chris are amazing parents❤

[@Freyasluckyarm]

Thank you

[@DaynaMathews]

I sure hope you both can get some sleep tonight. You deserve it! Oh my goodness I I’m just like you when it comes to crocheting! I’m a perfectionist and I get such anxiety. Oye do I feel you. I do a LOT of coloring. Get yourself a nice Johana Basford coloring book and some colored penciled. It helps! Love all you guys! Oh did you go to the festivities? So much fun! ❤️

[@lindamcauley4728]

I love her hair like that. And her smile warms my heart ❤️ 💙 💜 💖 💗

[@pammorris2868]

U and Stephanie deserve jewels I. Ur downs n heaven. U r both fantastic moms!!!!!!!

[@Freyasluckyarm]

Thank you so much!!

[@crystalIzed333]

I so feel you Marci. My twins are now 28 years old and one has disabilities. When they finally came home from ICU they were on different schedules...the nurses work 24 hours...one love was up during the day and my love with disabilities was up all night. We had to take turns. This lasted a long time.... Love to see the smiles 😃

[@colleenford5398]

I had this long msg I was going to but it disappeared! Perhaps God didn't want me to do that so I will just say, sending prays and good vibes for sleep. Much love to all! ❤❤❤❤❤❤😃😃😃😃😃😃

[@suemuster9826]

Freya is so darn cute, I love her smile. Freya and I have the same problem. Usually, I wake at about 1 am. and stay awake for hours. Wish I could sleep all night.❤❤❤

[@DianeLee-je7jm]

Crocheter here...thats exactly why I picked up crochet, to keep my hands busy. Had the same issue with tension in my yarn until I found the correct "hold" for me that felt comfy and let the yarn slide through easily. You'll find yours! Love your yarn choices (I'd start with the greenish for a scarf for ease). Possible suggestion for Princess Ya sleep: could you try keeping her up a bit later when she's on a streak like this, coupled with a slightly higher dose of Melatonin? Hoping for decent sleep tonight for all! 🙏

[@a.life.reimagined]

I crochet while watching videos (your videos). It's relaxing.❤❤

[@janeventer3376]

Ah the toddler conundrum, you kinda love those super early sleeps but dread them too! I'm glad you managed to grab a nap for yourself. You're a phenomenal mom and Freya is so precious. I can't get enough of her smile! Sending good vibes and Mama strength your way ❤❤❤

[@susanmahr6068]

My doctor told me to take Benadryl also for sleep issues. I'm much older than Freya but the Benadryl made me sleep walk. Yes, it was terrible and scary. So that was the end of that. Then I was told about Magnesium. I started taking it. I can say it does make my sleep better but I still cannot sleep 8 hours. Magnesium also comes in oil that can be rubbed on the feet. Melatonin is hormone and not a sleep aide. I was told that taking it for a long period of time will make the body stop making its own. Something to ponder on. Freya is making such a great progress. Will she ever be able to walk I wonder? Thanks for sharing your family life with us.

[@Freyasluckyarm]

Ooh I will have to look into the magnesium oil

[@susanmahr6068]

It is available. I have purchased it before.

[@sherryblankenbeker5730]

Marcie !! My head itches too when I do not get enough sleep ! I honestly thought that it was just my imagination but I find this so interesting ! This is when I pull out the Benadryl 😂 My husband will sneeze when he eats too quickly. He will often sneeze 10-13 times in a row !! I’m so sorry that you are so sleep deprived. I pray for your family daily 💗

[@Freyasluckyarm]

That’s so funny. I thought it was just me

[@kathryndomer2109]

God love you Marci, you are amazing. There is nothing worse than not being able to sleep. I suffer from this too. It’s really depressing in the middle of the night. Your house doesn’t look the same. I HATE it. I love what you do to Freya’s hair. So adorable. I used to crochet until Arthritis took over. It really relaxed me too. Good luck to making your scarves. Enjoy the rest of your day. Love, me 💋💗🧑🏼‍💻❤️💕

[@klarasarosi8159]

I luv the way freya luvs looking at everything and shes mostly calm while in the cart .very cute .i wishd i had ,had daughters yiyrs look so much fun and sweet .and why not make your lovely funny husband a scarf .and you might be good at it 😂 what have you got to lose .

[@betsybabf748]

I feel this. Since I had my ovaries removed then stopped HRT, I can't stay asleep at all. Have an appointment with my OBGYN tomorrow about this. I fall asleep for 60 to 90 minutes then wake up for 2-3 hours before I can fall asleep again for another hour or so. It's like I sleep in naps all night rather than a night's sleep. Having little broken sleep affects us so much.

[@Freyasluckyarm]

Ugh I’m so sorry. I hope you have a solution

[@SandraBugler-vq6co]

I have the same problem. Sleep an hour up for two. Mine started when I retired. I do the same all day long tho, so my days are wasted.

[@karenligus8224]

I have a son and daughter ( grown now) that both have ADHD and both were horrible sleepers. They are 12 years apart. I'd just get them settled and sleeping. I'd go to clean up the kitchen and I'd turn around and they'd be standing there, scaring the daylights out of me! Lol My daughter is 25 now and still a bad sleeper. I feel your grogginess Marci! Lol My daughter is crocheting me a scarf for Christmas. She has anxiety so she has 4 or 5 projects going at one time so I hope I get it! It's always nice to see Chris in your videos and hear how he shares in Freya's care.

[@kathryndomer2109]

You and your family are still a wonderful family. God bless and love you all. 💗🙏🏼

[@Angela-zp2gy]

I have anxiety too. Thinking about learning to knit. I need something to do besides scrolling social media. Love Freyas big smiles...shes such a sweetie but she needs to sleep and give you guys a break

[@tamerasides3425]

I'm the same way with not only crocheting, but also any kind of craft work.

[@mmmmlllljohn]

i feel for you guys … you have full days and need your sleep! I find if I take Magnesium at night, I sleep well. Maybe ask her doctor about it? Freya is one happy camper so it doesn’t faze her … lol! ❤️🇨🇦

[@patriciaharkin1571]

Sleep depravation is the worst. I had to deal with it long term when I took care of my mom who had Alzheimer's. She couldn't differentiate between day and night and would wake me up multiple times each night as she did her "walk through" the entire house. Trying to get 4 kids up and out to school the next morning seemed like a mammoth task and forward planning and occasional respite breaks were the only things that saved my sanity. I can fully empathize with you guys, it's no walk in the park. God bless.

[@Freyasluckyarm]

Thank you it is hard. My husband always says he thinks it’s odd that I like when the kids don’t have school. It’s because I don’t have to get all 4 of them off to school

[@patriciaharkin1571]

​@@FreyasluckyarmI understand that completely. 😊😊

[@marilyngaeta1362]

I love watching your family. I could watch you all day long. Freya’s smile makes my heart happy. You two are amazing parents. Hopefully one day soon you will get a full nights sleep.

[@Freyasluckyarm]

Thank you so much!

[@maryjones1]

Hah. I got a chuckle when you described how you are a perfectionist, and when crocheting, use an extra tight tension. I do have a tight tension too, but it was worse when I first started, and things did curl too often. Maybe going up a hook size will make a more relaxed item. I have had to frog many rows, and once or twice I have had to frog several inches due to not having consistent tension. Being sleep deprived is not fun, but it’s good that you get a nap in whenever you see an opportunity, and you feel your chores can be put off. I feel for you both. Hopefully Freya will move past this sleep pattern before long. Have a great day! 😊

[@janetrobichaud4176]

Lots of medical dialogue about benadryl lately. Many questions regarding this drug..I was surprised.

[@Unknown5925-]

Im not sure i would recommend benadryl. New studies show it causes dementia. Shes young but i still think melatonin is the better route. Thats just my opinion. I take melatonin and a mild sleep aide to help me sleep with insomnia. I have medical PTSD and anxiety. Marci, your such a great mom! I admire your strength. ❤ Michele from Indiana

[@beckyrhodes8280]

I'm sorry that Freya isn't sleeping! I know that is putting stress on y'all not getting enough sleep 😴! Hope it doesn't last long ❤ !! I love seeing Freya smiling she is so ADORABLE 🥰🥰 Y'all need to take care of y'all self also Great Video 👍😊. I'll be praying for you and your family 💖🥰🙏🙏🙏🙏!! HAVE A BLESS DAY TO YOU ALL ❤️🙏❤️🙏❤️🙏❤️🙏!!!!!!

[@createconsiderconnect3356]

Loud car wash noises is not where it’s at. By that I mean I listen with in ear headphones & it hurt my ears sooooo bad when the loud part of the car wash happened. I had my hands full & literally dropped everything on the floor trying to turn the video off as fast as I could when the loud part of the car wash came on. I mentioned on another video that the noises of stirring, scraping, blending, chopping, etc while cooking wasn’t pleasant for the listener either I feel like this kinda noise falls in that category. Again maybe I’m the odd one out, but I know you care about your subscribers so I’m taking a chance with being honest hoping to not hurt feelings just making known a situation that you may not notice when editing. Thank you for your time & consideration for my thoughts.

[@carolynwalker9920]

I have a daughter with ASD and she has always been a bad sleeper and still is at 21 years old. The problems I had trying to get her to sleep and then get her up for school I could wire a book about. I think I was the only parent that longed for school holidays 😂😂😂❤

[@marymargaretkluge5057]

Love your videos! I love to crochet and also crochet tightly, try using a larger hook size than the one suggested on the yarn package. you have such a lovely family!

[@Freyasluckyarm]

Thanks for sharing!!

[@meaghanparent8740]

❤❤❤awww I definitely feel you on the sleep deprivation! Would love if you could talk a bit more about your anxiety (and how you cope), I am really struggling with it these days

[@Freyasluckyarm]

I am struggling too. Anxiety and depression. Wish I could give you any advice but I just kind of struggle through it. Finding a good therapist is on my to do liat

[@meaghanparent8740]

@@Freyasluckyarm well it helps to know I am not alone.💗💗💗 I am looking for a therapist too!

[@bettysutton3376]

She is sooooo adorable 🥰🥰🥰

[@patriciacarey6324]

She is the sweetest 💕💕

[@jordangristina615]

I understand your special needs daughter has trouble with sleep I have trouble with sleep due to Asperger's and bipolar disorder

[@nataliaadamczak3110]

How about to give her some Melissa balm tea or chamomile herbal tea

[@biddiemutter3481]

You are so welcoming

[@dzenanzenovic-fl4bw]

I LOVE YOU PRINCESS FREYAAA ❤️💝❤❤❤❤❤

[@DesMowadeng]

I don't know what the long term effects of benedryl would be if taken daily. And it wouldn't be predictable as far as what nights and when she has the bouts of not sleeping but, if you were able to give her the benedryl to go to sleep and the other so that she falls back asleep if she wakes that might avoid the potential of her being sleepy and moody during the day. Also, you shouldn't have to much of a problem finding a crochet scarf tutorial video on here to get an idea for a pattern or stitch ideas.

[@Freyasluckyarm]

I found a couple and started last night but I thought it was too wide so I took it apart and am going to start again

[@DesMowadeng]

@@Freyasluckyarm there is that... They do make scarfs wide and LONG, which for me in a wheelchair it's annoying! If you find a pattern you like, but want the scarf not to be as long or wide, just decrease the chain stitches and as long as you remember where to make the right pattern changes you should be good.

[@Freyasluckyarm]

Yes this is what I am planning on doing. The pattern said to do 24 stitches. I am thinking half that would be good for a chunky scarf

[@DesMowadeng]

@@Freyasluckyarm 24, that seems like a lot. I love crochet, I can do simple stuff but I'm not by any means good at it. Infinity scarfs are my favorite but that might not go over well as a mans gift LOL. They are dainty and pretty.

[@toniavasseur9574]

Dang My nephew is like seven since he was a baby I’ve been buying them presents that are like a quilt queen size quilt space theme I always like go out and beyond now that he’s turning gonna be turning eight I don’t know what to get them now this is the first time I’ve not known what to not get him

[@Freyasluckyarm]

It’s harder as they get older

[@pammorris2868]

Have u tried Umbrelvy for ur migraines. I have suffered for years and this has been a lifesaver

[@Freyasluckyarm]

I haven’t tried that one specifically but have tried many different ones throughout the year. Most knock me out which I don’t love.

[@marywilliamson1260]

I luv when Freya smies in the camera..she's a ham!

[@Freyasluckyarm]

She is. She knows when the camera is on her

[@kazholt1]

❤❤❤❤❤❤❤❤❤😊

[@gailathomas5218]

Does Freya’s sleep patterns have any connection to her growth pattern? I know children eat more when they are growing. Maybe they sleep more also?

[@Freyasluckyarm]

I’ve never been able to pin down any type of pattern but it’s possible

[@user-dd1ne2fg5l]

Lol if freya dont't get tired the other two girls will!

[@SandraBugler-vq6co]

Does it bother your kids they get so little for chrstmas? I know it shouldn't be about the gifts but how do they feel when other kids tell them how much they get. I was the other way....I always went overboard which is nit a goid idea. I did nit buy anything throughout the year and a few days after Christmas put presents away and pulled them out at a later date. I did buy clothes tho.

[@Freyasluckyarm]

They have never voiced any disappointment.

[@margeestes253]

Does she also have times when she sleeps for long stretches of time. I know BOS kids experience this too. (bohring opitz syndrome )

[@Freyasluckyarm]

No she has periods of sleeping through the night but we don’t experience extra sleeping

[@teresapentz6079]

How About a gift from Santa ? Stockings ? Or do you not believe in that?

[@Freyasluckyarm]

The stockings are from Santa. We dont want the big gift to be from Santa.

[@teresapentz6079]

Ahhhh ok ❤

[@catharineedgar9011]

We’ve had early morning baths too 😂 This is totally anecdotal, but I’ve noticed that Vitamin D drops help my autistic boy fall back asleep when he wakes up early. I’m sure Freya gets all of her vitamin D from her milk, buuuut maybe something to ask her doc?

[@Freyasluckyarm]

Thank you I will ask

[@vdeniceeckert3494]

Does she cry when she awakes, maybe something to drink and a half dose of benedryl

[@Freyasluckyarm]

She does. We give her a bottle and then depending on the time we will give her medication

[@lynda2023]

😊❤x