How Our Family Has Changed...For The Better ~ Latest Happenings ~ Dr Updates

Being a mother was something I wanted for a long long time. I LOVE being a mother. When I first became a mother after a very rough pregnancy, it was the most amazing moment in my life holding my beautiful baby girl. Watching Ava grow up and progress was so fun and I felt so proud as she hit all the milestones she was suppose to plus some. She was right on track and we were very very proud parents. She was even potty trained at 2!!! Needless to say things were fairly easy with Ava as she grew and progressed right on track. As a teacher I was very happy to see that my child was hopefully going to love learning and not have a difficult time at that.

My Reasons for never giving up! I love being their mom!

Flash forward 4 years later on March 20, 2015 when I was able to experience the most incredible moment of my life again...holding my second daughter who looked just like my first one and feeling so excited for them to meet. So excited for them to play together, get into trouble together, run together, and do everything together that I did with my sister (my best friend). All those dreams felt squashed 5 days later when Emma was diagnosed with Lissencephaly. As doctors explained to us that Emma would be severely developmentally delayed, with no talking, no sitting up, no crawling, no walking, no emotion, and maybe no smiling (basically stop developing at about 3-5 months of age). My heart broke all Ava had wanted was a sibling, I didn't know who to hurt for... Emma, Ava or Brandon and myself. I quickly decided I couldn't be sorry for us as parents, and I couldn't let Ava think that she would never have the relationship with her sister that we daydreamed about everyday of my pregnancy. So instead of feeling bad for Emma we decided to steer that emotion to doing for Emma. This little girl was loved and she was going to know nothing less. She was going to see how much she was loved and see how many people were fighting in her corner. As time as passed I have realized Ava doesn't really know what she is missing in a sister because she has so much more than that. The relationship that they have is beyond words as you see in pictures and videos. This is a bond that will last forever and is so so strong. I came across a quote that goes like this "If you want to know how to treat a special needs child, looks towards their sibling they will show you" Ava is growing and blooming into the most beautiful person that I know inside and out. Her strength and knowledge of Emma and her diagnosis is amazing. I know this will continue to lead Ava to be the most incredible adult with passion and love for everyone.

LOVE!!!!

Now about how this has changed me and Brandon as parents.... We no longer read about where my child should be developmentally, as we did with Ava. We honestly don't even know what she should be doing all I know is what she IS doing and we am very proud of her for that. Don't get me wrong we have many friends and family who have little ones close to Emma's age and yes it hurts to see all their developments and progress. But they are all so amazing and the first thing they always say is Emma is doing so good. No, we are not bitter but, yes it hurts we believe it will always sting a little but we love Emma and nothing will change that! We have also learned that not everyone is going to be as comfortable with Emma as we would like. It is hard to find someone to watch a little one that could have a seizure at any moment. Some are even scared to hold her and that is ok it takes time but the hard part is we never know how much time we have (any of us) so lets stop and Embrace every moment that we have together. Finding our "new normal" and living life day to day is the best decision we have ever made (besides CBD oil of course ;)

One thing I would like to throw out there is if you are meeting some one new with a little one and you don't know their situation well, please don't ask developmental questions. I have realized in our society that when someone meets you for the first time and ask how old as soon as you say 1 years old they automatically ask if is she walking. I have to answer no. It's not an easy question to answer so if you can please stay away from developmental questions they are not fun to answer. Especially when there isn't time to explain or maybe it's not the time to explain. I know that it's hard even when the child doesn't "look" like she has something wrong she can. With that being said don't judge a book by its cover!!! I will never stop fighting for Emma and what I think is right for her. I will help her tell her story so that so many others that fall in a similar situation can hopefully see all the hope that Emma brings into this world.

Yes, as parents we still have our breakdowns (but we have a rule only one of us at a time haha). We love her so much and we hate all that she has to go through but when she does it with a smile she reminds us she was built to do this. She is the strongest person I know.  Emma has definitely made us all better people and we can't thank her enough for that. I knew from the moment I wanted to become a teacher that I loved learning and I would continue learning for the rest of my life and love it. But I never knew who my teacher was going to be and now I know....she is the best teacher I could have ever asked for, EMMA!


BRAINWAVE: 2 Days left to sign up for the Brainwave 5K and Motorcycle Rally. We would love your support to join our team...TEAM EMBRACE LIFE EMMA. Join today it will be a blast with a kids fair, princess tea party, and a concert in the evening by Ty Herndon. sign up at childrenandtheearth.com 

Some of you have been asking how you can donate to Emma if you can't be there on Saturday June 11th. Well today I have an answer. If you go to the website childrenandtheearth.com and click BUY TICKETS NOW. It will take you to a page that gives you these options (see picture). One option is to donate only. I hope this helps :) Thanks again for your love and support <3 One place we would really like to take Emma is:https://www.facebook.com/pages/Napa-Neurological-Physical-Abilitation-Center/141073486039435?fref=ts. Thanks for your help to get her there one day. Sending love to you all!

We got so lucky and the wonderful Mascot Miracle Foundation gave our family a photo session at Camera Shy. We had never been there before but we were very happy with our pictures.

Here are some fun pictures that have happened since the last update....

Emma loves pudding - trying to fatten this girl up lol

Emma took off mommys glasses!!!

Big sister had her first dance recital and she rocked it. We were also shocked because her amazing dance studio
shared Emma's story and did a fundraiser for her. Thanks so much Vision Dance you are the BEST!

Hands and knees NO....O wait there is sister I can smile LOL

hands and knees practice with mom and dad before bed

Ava made the dance team!!!!

This litte lady is 14 months old!

time to brush those little teeth we finally have 4

Hey mom I think I wanna grab my bottle today!!!! 

 I have to share this because when I first seen these I thought how horrible there is no way they can be happy. Well I was TOTALLY WRONG! Emma loved using this neck ring for the first time in the bathtub. I am so excited to take her swimming, not even one tear! She loved being free to move and float. You can get these a couple different places but we got ours from eBay for only 5$!!!! Disclaimer.....if your interested in one for your kiddo if they arch back a done like Emma this will tip them over backwards. Thank goodness big sister was paying attention when Emma decide to arch back. But all in all a great purchase and we are so excited for summer, we plan on swimming a lot since it will help Emma so much to relax her muscles!!! 

swimming neck ring looks like torture but its absolutely amazing!!!!

Mascot Miracles come through again with Dream Night at Hogle Zoo it was so special for us as it was Emma's first time at the zoo. Plus we are so blessed because Angels Hands Foundation also just gave us a zoo pass!!!! We are so excited to create so many memories!

Zoo was exhausting haha

We went swimming and this bathing beauty had a great time.

Check out this super dad in the middle of the flyer for Firefly. Boy we are 3 very lucky ladies!

This girl makes me feel a million of emotions everyday 😢😂😍😩😳😠🤗😘😜😮but this smile gets me the most. For Drs thinking she would never be able to show emotion or communicate....I think she does a pretty dang good job! Keep shining beautiful girl 😍🌟‪

This little cutie is happy to say her eye appointment went fabulous! Her eyes are doing awesome with tracking and movement. She's rarely crossing them anymore (Besides when the bottle or toys are close in which its normal). Dr Owen is very happy with her progress. She still has a slight astigmatism but nothing that warrants glasses. So we will watch her and follow up again in 6 months. Vision therapy has worked wonders for Emma. So thankful for early intervention birth-3 they have helped Emma so much with physical therapy, occupational therapy and vision therapy. Thanks Jordan School District

happy girl at her eye appointment she loves good news!

As we were getting ready to tuck in the girls we were having a little cuddle time and we were trying to get Emma to say Ava. We sure got a surprise tonight. Sorry for the dark video we were setting the bedtime mood. Maybe we hear what we want but this girl is getting more and more vocal about what she wants and what she doesn't want lol. We couldn't be more happy about it.



I love how her and Ava are having a conversation from one room to another lol the bond between these two makes my heart exploded with love   

Emma decided that between 2-5 AM it would be so fun to hang out. We looked through old pictures and videos. We came across this video and I was surprised I hadn't shared it yet. I promise it will make you smile. This laugh never gets old. Thank you Ava for making it so we can here this laugh often. Don't know what we would do without Ava to help us through it all. I don't know that we would have ever heard this laugh without cbd oil. I know we never heard it before the oil, we are so blessed to have access and pray one day soon everyone will.  ‪#‎qualityoflifematters‬ ‪#‎WHYCW‬ ‪#‎embracelifeemma‬‪#‎lissencephaly‬ ‪#‎cbdoil‬ ‪#‎charleeslaw‬ ‪#‎bellylaughs‬ ‪#‎epilepsy‬


Little Miss Emma sure loves ceiling fans ok wait she is obsessed with them haha. When you walk into any room she can spot a fan as fast as we can. She starts cooing, kicking and almost yelling to get us to make it spin. Lol here she is tonight loving the fan. This video shows that Emma knows what she wants and she understands much more than doctors ever thought she would. Thanks Emma for showing us the joy in so many things....including ceiling fans. On a side note remember to share this post and Emma's page so we can help create awareness. I was contacted this last week from a mom whos baby boy was recently diagnosed with lissencephaly and I was so happy to talk to her and help in any way I can. So thanks for sharing to make that possible 💜 *sorry not great video quality it was kinda dark*


Doctor Updates:

PEDIATRICIAN: Emma has another well check on the 22nd of June and we are very excited to check in on her weight. She wasn't too low or off the charts low but we don't want her to even get close so we have increased her feedings and added lots of yummy fat LOL. She is loving Avocados :)

NEUROLOGIST: The Neuro is a follow up in Sept. unless we need her sooner!

OPTHAMOLOGIST: Eye doctor went great as postive above and we will follow up again in December unless we fell we need to sooner!

NEURO REHABILITATION: We now have another new doctor who we really seem to like, her name is Dr Krensky. She is at the Utah Neurological Rehabilitation Center and we are really excited for her to help us with Emma's muscle spasticity (stiffness) She feels that at this point Emma is not super high tone so we will try to see if massage will work for now, So she taught us how to massage her feet as a starting point and then we will follow up in July and she has provided us with a massage therpaist to meet with us at that appointment as well to teach us more. She said the most amazing thing to us and I will never forget it she said....."I don't diagnose an MRI, I diagnose the child"...<3 

THERAPY: Emma is still recieving therapy during the week. She gets physical, occupational and vision therpay every week. Our therapists are amazing and helping Emma so much every visit. Thank you!

IF I HAVE LEFT OUT ANY INFO THAT YOU WOULD LIKE TO KNOW ABOUT EMMA PLEASE JUST COMMENT AND ASK OR YOU CAN EMAIL US AT embracelifeemma@gmail.com

*Remember to share Emma's story every chance you get on social media. I recently had another family contact us asking questions as their son was currently in the hopsital and just diagnosed with lissencephaly. I pray that we helped them and gave them some hope. I have had another new friendship blossom with another amazing mother! Sending love to you all thank you for all the support we are so blessed to have you in our lives.

FACEBOOK: Facebook.com/embracelifeemma
INSTAGRAM: @embrace_life_emma