Not Only Life Changing But Life Saving....Charlotte's Web Has Given Emma Quality of Life

Emma hadn't had an EEG since August 2015 after starting to have Infantile Spasms as most of you know we tried medication after medication trying to get the spasms stopped. Once we finally got them stopped she had maxed out on one med and the other med was making her not eat. We were losing the little girl we had once had. All she wanted to do was sleep :( She wouldn't smile and play, she didn't want to be touched, she was just all round not a happy girl. This also was partly from the steriods that were still in her system. It was a rough few months, Emma was miserable. Since we had tried so many meds we were able to try CBD Oil. The oil that we chose to order is called Charlotte's Web (as seen on Dateline). We started this oil in October so Emma had not had another EEG since. I was worried that maybe she was having Infantile Spasms again so we requested a routine EEG. Pics of EEG. This girl is a fighter she is so strong and brave!

Getting them place on her head

All in place and ready to wrap her head

All wrapped up

Letting me know with a little smile that all is going to be ok...Shes got this!

Slept the whole time...good job little lady!

Well I am happy to report that I WAS WRONG!!!!! Here is the post that I shared on facebook explaining the results of her EEG.....

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 😉.

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....

Can you tell?????

Here are some more fun pictures of her EMBRACING LIFE!!!!

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!

Mommy loves to take pictures of me while I sleep

Big sister got a new bike - paid for with her own money!!! (she was pretty proud) 

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)

2 Teeth!!!!

Funny outtakes/bloopers: love this sassy pants

Precious girl 😍 before our lives changed a little over a year ago
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

Hanging out in the beautiful sunshine. The sun was our therapy today! Love these moments

watching big sis ride her new bike

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

Another Lissencephaly mom made this and shared it with us!

AHHHHH Big sister had her kindergarten orientation....she can't be that old yet 

Having fun with the Mascot Miracles

GO UVU!

HEY MOM!

The Shirt says it all!!!

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! 

https://www.bonfirefunds.com/embrace-life

The Bond Between 

These 2 Sisters is Amazing...

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!!!!

Living with Lissencephaly....One Year Since Diagnosis

On March 25, 2015 (at 5 days old) Emma was diagnosed with Lissencephaly and its been quite the year full of ups and downs. Lots of learning has taken place in the last year but our "teacher" (Emma) is amazing and her smile guides us through it every day. On Emma's facebook page I posted this on her DD (diagnosis day):

What a difference a year makes! 

One year ago was diagnosis day. I will never forget the empty dark feeling as the Drs came into the room to share their findings after the MRI. I only heard a handful of words the words that stuck out most in my mind was severely developmentally delayed.....my mind went blank and the room was spinning faster than I could even imagine. The word lissencephaly was not even close to being in my vocabulary. I could do nothing but cry, cry and cry some more. My heart broke for us as parents wondering how would be good enough to take care of her and give Ava what she needs. Then my pain shifted to Ava she was so excited to have a sister to play with and chase around. What do we tell her? How do we do this? What next? Sadly no one had answers for us. Every question we asked the answer was we don't know it's s big spectrum. We were basically told to go home and love her. So that's what we did. We loved, loved and loved some more. Did I mention this girl is LOVED!!! One year later still not too many answers we live our "new normal" take things day by day and watch our girls play in their very own special way. Such a special bond Ava and Emma have. So blessed to be her parents. This is a hard day but it was the beginning to a new world with an amazing tour guide. We love you Emma! 

Over the last year Emma has made progressions that we thought would never be possible. With her diagnosis they say that she most likely won't develop much past 3-5 months of age here is a sample chart of what a "typical" child can do at about that age:

4 MONTH MILESTONES OF "TYPICAL" CHILD:

Social and Emotional (EMMA IS A PRO IN THIS AREA)

• Smiles spontaneously, especially at people
• Likes to play with people and might cry when playing stops
• Copies some movements and facial expressions, like smiling or frowning

Language/Communication (EMMA DOES ALL OF THESE TOO)

• Begins to babble
• Babbles with expression and copies sounds he hears
• Cries in different ways to show hunger, pain, or being tired

Cognitive (learning, thinking, problem-solving)

• Lets you know if she is happy or sad (YEP)
• Responds to affection (YEP)
• Reaches for toy with one hand (STILL WORKING HARD - HAPPENS SOMETIMES)
• Uses hands and eyes together, such as seeing a toy and reaching for it (HAS HAPPENED A HANDFUL OF TIMES)
• Follows moving things with eyes from side to side (ALL THE TIME)
• Watches faces closely (LOVES LOVES FACES COULD WATCH AND FOLLOW YOU ALL DAY)
• Recognizes familiar people and things at a distance (100% RECOGNIZES FACES)

6 MONTH MILESTONES OF "TYPICAL" CHILD:

Social and Emotional: (LOVES ALL OF THESE -still wonders about the mirror stares sometimes but mostly looks at me not herself)

• Knows familiar faces and begins to know if someone is a stranger
• Likes to play with others, especially parents
• Responds to other people’s emotions and often seems happy
• Likes to look at self in a mirror 

Language/Communication (YEP-SEE VIDEO BELOW)

• Responds to sounds by making sounds
• Strings vowels together when babbling (“ah,” “eh,” “oh”) and likes taking turns with parent while making sounds
• Responds to own name
• Makes sounds to show joy and displeasure
• Begins to say consonant sounds (jabbering with “m,” “b”)

Cognitive (learning, thinking, problem-solving)

• Looks around at things nearby (YES)
• Brings things to mouth (HANDS AND PUSHES BINKY IN IF FALLS OUT BUT CAN PICK IT UP TO BUT IN HERSELF)
• Shows curiosity about things and tries to get things that are out of reach (NO UNLESS ITS A PERSON)
• Begins to pass things from one hand to the other (WORKING HARD THIS IS A GOAL IN OT AND VISION THERAPY)

Movement/Physical Development

• Rolls over in both directions (front to back, back to front) (ONLY CAN GO FROM BELLY TO BACK)
• Begins to sit without support (YES BUT FOR A MINUTE OR TWO AT A TIME)
• When standing, supports weight on legs and might bounce (NO)
• Rocks back and forth, sometimes crawling backward before moving forward (CAN STAY ON HANDS AND KNEES SLIGHTLY SUPPORTED FOR 8-10 MINUTES AT A TIME)

 When I look at all these milestones I feel pretty amazing about where Emma is falling right now. She has worked so hard to get where she is now. Most one year olds don't really have to work to get these milestones they just come as they develop but for Emma it took hours, day, weeks and sometimes months for her to achieve some of these goals. She makes us so proud everyday and we are so happy she chose us!

I have so many things to share on this post so sorry if it's a little overwhelming but I don't want to forget to document anything!

As a parent when you are told that your 5 day old probably won't ever do anything you imagined she would the whole world becomes dark and gloomy. So these moments I am going to share with you are huge for Emma and Huge for mommy and daddy. I love hearing her giggle and talk something we were told most likely would never happen! Here are also some resent pictures:

Hanging by the pool - We love Easter Vacation - Spring Break

Vacation was over and she did not like pool therapy when we got home LOL

Two Beautiful Girls on Easter Sunday - notice she is sitting up unassisted :)

Emma finally got to swing yay!!!! SO FUN!

THIS IS AWESOME MOM AND DAD! 

Therapy practicing hands and knees to crawl

These two ride in the car every time just like this.
We always wondered why Emma likes to use her left hand but I think now I know ;)

National Sibling Day and Carters clothing shared a pic of guess who..... MY GIRLS!!!

Here are some videos worth sharing!!! These are huge memories for our family! Remember to EMBRACE LIFE and make every moment count! Big sister really also wanted to share a video too! She's been working hard in dance here is something her and daddy have been working on!

💜

Thanks for following and learning about out beautiful Emma and Lissencephaly. Remember Emma also has a Facebook page and an Instagram, don't forget to follow them for the most recent updates and inchstones :) We also love comments and people reaching out to us to either share their story or to ask questions. You can reach out to us either through a private message on Emma's Facebook page or you can email us at, embracelifeemma@gmail.com

Facebook Link: https://www.facebook.com/Embracelifeemma/

Instagram Name: embrace_life_emma

💜