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| Getting them place on her head |
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| All in place and ready to wrap her head |
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| All wrapped up |
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| Letting me know with a little smile that all is going to be ok...Shes got this! |
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| Slept the whole time...good job little lady! |
It was 3:49 PM on April 12, 2016 and the phone rang....my heart stopped it was the Neurologist. Emma had an EEG early that day and we were waiting for the results which we weren't expecting until the next day, so that made me even more nervous to answer the phone. Previously she had an EEG on Aug 10, 2015 and it showed high seizure activity even when they weren't be exhibited to us physically, they were still happening, and she was on 3 prescription seizure meds and now she's only on CBD oil. So needless to say I was nervous but hopeful.
As I answered the phone I listened with all my heart trying to make sure I took it all in and wrote it down to relay to Brandon. But then she said the following;
First of all there was no
hypsarrhythmia (which
means infantile spams) and more importantly
Emma showed NO signs
of seizure activity. So
this EEG was the best
EEG someone with
Lissencephaly could ask
for.
I lost my train of thought I was all ready to take notes but then there was nothing to write down except ZERO SEIZURE ACTIVITY!!!!!! Shock is an understatement and happy is too. We are thrilled, over the moon, on cloud 9, etc. Anyways you get the picture .
First of all there was no
hypsarrhythmia (which
means infantile spams) and more importantly
Emma showed NO signs
of seizure activity. So
this EEG was the best
EEG someone with
Lissencephaly could ask
for.
I lost my train of thought I was all ready to take notes but then there was nothing to write down except ZERO SEIZURE ACTIVITY!!!!!! Shock is an understatement and happy is too. We are thrilled, over the moon, on cloud 9, etc. Anyways you get the picture .
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| THE FACE OF CANNABIS |
So with this all being said I want to ask you to please please please share this post to spread awareness of the benefits that CBD oil can provide. Too many people are uneducated when it comes to the oil and they aren't affected by it so they don't care. The stigma behind the oil is ridiculous Emma is living proof that it works and you can't deny results. We feel so lucky to live where we can administer the oil to Emma, our hearts break for those who want to use it but can't.
A HUGE thanks to Realm of Caring and CW Botanicals for Charlottes Web, it has changed our lives and given Emma a quality of life we could have never imagined was possible. I mean come on NO seizure activity from a child with a SMOOTH BRAIN!
Share share share make people see why they need to say YES TO CBD! To learn more about Emma, Lissencephaly, and her journey with Charlottes Web please follow us on this Facebook page and/or Instagram embrace_life_emma heck why not both so you don't miss a thing and remember as Emma has taught us always EMBRACE LIFE! 💕 #whycw#lissencephaly #smoothisbeautiful #embracelifeemma #faceofcannabis#charlottesweb #realmofcaring #cwbotanicals #qualityoflife#noseizureactivity #epilepsy #feelingblessed #charleeslawHB105utah
I also have something else to show you how thankful we are to have access to CBD oil. Below is a collage of pictures of Emma. I want you to see if you can pick out the pictures to tell the difference between when she was on 3 precription anti seizure meds and when she is on CBD oil....
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| Can you tell????? |
Here are some more fun pictures of her EMBRACING LIFE!!!!
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| Just to show what Emma's brain looks like compared to a "typical brain" We feel its amazing with her brain this way for the EEG to show up as NO seizure activity! |
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| Mommy loves to take pictures of me while I sleep |
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| Big sister got a new bike - paid for with her own money!!! (she was pretty proud) |
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| Emma is pulling moms hair and I LOVE IT!!!! (the things you enjoy when you are told they will never do something and the do it) |
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| 2 Teeth!!!! |
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| Funny outtakes/bloopers: love this sassy pants |
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this would just have been a cute picture of our little Emma.
But now it's so much more than that.
*she's sucking on her pacifier so she's working on her suck reflex. -Which we pray she never loses
*her hands are midline together and touching-this is huge!
*grabbing and holding her pacifier in when it slides out *cuddling her blanket and her cat attached to her pacifier.
*her arms and hands are nice and relaxed not tight/tense
All of these are goals we are working on in therapy. WubbaNub #wubbanubaden + anais #adenandanais #inchstones #lissencephaly #epilepsy#embracelifeemma #workinghard24/7 #dreamawaylittleone #precious
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| Hanging out in the beautiful sunshine. The sun was our therapy today! Love these moments |
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| watching big sis ride her new bike |
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| Not sure how we are so lucky to have so many amazing people in our lives. As most of you know I am a teacher and one of my students from my first year and her mom sent us the most incredible gift. Jennie runs a jewelry making business and made these necklaces for me and Ava, a keychain for Brandon and a cute diaper bag clip for Emma. Ava and Emma's are matching with 2 hearts one for each of them. They all say Smooth is Beautiful 💕 I cannot express how much we love them. Thanks Jennie and Kennadi check out and follow her Facebook page her jewelry is beautiful...Facebook.com/inspireddaisydesign |
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| Another Lissencephaly mom made this and shared it with us! |
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| AHHHHH Big sister had her kindergarten orientation....she can't be that old yet |
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| Having fun with the Mascot Miracles |
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| GO UVU! |
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| HEY MOM! |
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| The Shirt says it all!!! |
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of course mom had to take another sleeping picture look how cute I am! Coming up |
Who's ready for a 5k and Motorcycle Rally?? Please join Team Embrace Life Emma on June11th. Please join our team, it will be a fun day for all!! You can pre register at childrenandtheearth.com. Once you get to the website then you click BUY TICKETS NOW when signing up to buy your tickets don't forget to pick Team Embrace Life Emma ( be careful there are 2 Emma's). I would also like to thank The Children and The Earth for making this fundraiser possible. Remember kids can do the 5k too! Scooters are allowed for the kiddos to ride instead of run, strollers, wagons etc. Lol run... come on if you know us we will be walking haha. Please join us!
There is also a Kids Fair with a ton of kid activities and a concert, Ty Herndon will be there!!!! If you are interested in tickets for the concert please contact me and I can get them for you. The Team that sales the most concert tickets will get a bonus but they have to be bought through me and not the website smile emoticon
Don't live here in Utah? or can't make it that day? Well good news there is also an option to be a Virtual Walker and we would love your support from all over the world!!!! Please share get all your friends involved I promise it will be fun! This is an open event please share and invite friends who you think might be interested in joining our team
JOIN OUR TEAM FOR A FUN FILLED DAY!
TEAM EMBRACE LIFE EMMA!
T-SHIRTS FOR SALE AGAIN
If you missed out and want to get an Embrace Life Emma shirt now is your chance, or if you love them (they are super soft) and want another one don't miss out. 4 days only!!! Closes on May 3rd. Here is he link to order yours today!
The Bond Between
These 2 Sisters is Amazing...
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Emma turns to Ava constantly for reassurance in many situations. Today Ava helped keep her calm at the doctors office. Emma's been fighting some horrible ear infections. Today she had to have her ears flushed she's starting a new Antibiotic tonight praying it works. Happy to report no seizures tho even with these painful ear infections. Thanks charlottes web These two melt my heart. Their bond is beyond words. #sistersforever#blessed #lissencephaly #epilepsy #earinfections #embracelifeemma#charlottesweb #whycw #cwbotanicals #realmofcaring#blessedtobetheirmom
In closing Charlotte's Web (CBD oil) has not only given Emma quality of life (as you can see from the pictures above) but we feel it has saved her. Some kids with Lissencephaly don't make it to their first birthday and we are so blessed that Emma did. Her seizure control is very important, the seizures are usually what makes Lissencepahly such a complicated diagnosis. She lasts longer during therapy, she smiles, she laughs, she plays. Charlotte's Web brought Emma to us. Emma is now Emma because of Charlotte's Web, We feel so blessed to see her personality and share moments we never thought possible with her. Who wouldn't want this???... Please share this with everyone you know. Help us spread awareness for CBD oil fight for access for everyone, quality of life matters....let's save some lives together. FIGHT FOR ACCESS!!!!
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