Ketogenic Update, Questions, Foundation Info and Brainwave

Ketogenic Diet:

As I sit here and comb my fingers through Emma's hair my heart is literally breaking because she is so tired from all these seizures. Her body is just quivering from all the seizures no matter how much I wrap her up and snuggle her she still just shivers like she is freezing. I believe this is from her muscles just being exhausted because it's like a full work out every time she seizes. She is also battling the side effects of the diet which make her tired and weak as her body adjusts to this new ratio, no carbs and no sugars (her poor body).  Read more about how the diet works here:
 https://www.facebook.com/Embracelifeemma/photos/a.979834438818643.1073741830.628304373971653/989405147861572/?type=3&theater

Labs are no fun but Emma is a fighter

We got word today that her labs are looking great from adjusting to the 4:1 ratio which she has been on for one week as of today. We also got great news that her labs were great and we are able to start weaning the Onfi medication she is on. This is a med that can be very hard to get off of so we didn't want her on it for a long period of time especially when it's not working for her. This med also has caused us to put a hold on increasing her CBD oil as much as we would like to since they interact with each other. So our plan is to wean this med and then hopefully have room to play with the oil to increase it. We pray that the diet will work and we can do CBD oil and the ketogenic diet. Our Drs say that the diet is in no way a fail just yet, they want her to at least be on it for up to 5 months. After that if we see no improvement we can consider it a fail. But even little improvement would give us hope to go for longer trial period, because overall Emma's body is handling the diet wonderfully.

Questions From You:

*How do you access CBD oil and what was the process to get it in the state of Utah?
We order Emma's CBD oil from a company called Charlotte's Web (cwhemp). They are located in Colorado and they ship her oil directly to our house. They have various strengths of the oil and she takes the Everyday Advanced (highest amount cannabinoids). CBD oil has a very very low amount of THC (less than .03%). THC is actually also very beneficial for kiddos like Emma due to muscle tone (painful) and seizures. Some kids need THC in addition to CBD to get the full seizure control. Sadly, we don't legally have access to THC to help her to the fullest extent but if we can create awareness to show people how important this plant is maybe we can get a law passed to legalize Medical Cannabis (currently working on it here in Utah).

*How has Emma's diagnosis affected Ava (big sister) in both good and bad ways?

When Emma was diagnosed my heart dropped for us as parents but mostly for Ava. Before Emma was born all Ava would talk about it how much fun they were going to have playing together. How was I going to turn and tell our 4 year old that her little sister might die and soon. We decided to be as honest as possible to Ava when explaining Emma's Diagnosis, but didn't want to discuss life expectancy with her because honestly who knows.....NO ONE KNOWS! Ava grew up really, really fast and went from 4 years old to 12 years old overnight. She is very, very compassionate towards others and has learned everyone is different and that's ok. As far as affecting her in a bad way...I am sad she had to grow up so fast. I am also sad that she has a false sense of what it's like to have a sibling or to be a big sister. She thinks being a big sister is helping with therapy, comforting her little sister through a seizure, and hooking up a G-tube feeding. All these things are normal for her and that hurts my heart. Here is another example....My sister had a baby in January and a month ago Ava came up to me and said that her new cousin, Brynlee was freaking her out, I asked why and she replied because she already has head control. I had to explain to her that yes that is a normal age to learn to hold your head up. She also asked when Brynlee would start having seizures. This kind of stuff breaks my heart because she thinks this is how life is, not that our life is bad we are just different. She also has a hard time that Emma has been sleeping in our room lately due to seizures so it hurts her feelings which I can't blame her, so daddy has been being a good sport and having sleep overs with her. She has more worry than a 6 year old should have but man does she handle it well.

*How does Emma have Lissencephaly but not Ava if its genetic?
They believe that Emma's partial deletion on chromosome 17 happened by a random mutation. So they don't think it had anything to do with our genetic make-up and that it was just random. Lissencephaly occurs 1 in 100,000


*What do we do for fun with Emma, What is her favorite things to do?

see light up sticks in her hands :)

This question is kinda a two part question....so what we like to do as a family with Emma is anything outside Emma absolutely loves being outside. So swimming, park, just laying on the grass, and Lagoon amusement park (even the water park). As far as some of Emma's favorite things to do besides being outside is her balloons, Emma has a love for Mylar balloons we should take up stock in balloons LOL. She also loves her light up toy sticks (see pic), one more toy she loves is her beads (see pic) sadly her interest to these toys have kinda been put on hold since the seizure outbreak but we have faith she will get it all back. But in all honesty Emma is happiest when playing with her sister.

Hanging outside with the family

Emma Loving her Balloon

More Beads

most favorite is just being together with her sister

*How many seizures does she have in a 24 hour period?
Currently Emma is having between 10-20 seizures. Sometimes her seizures come in clusters so even though we count it as one she sometimes has a cluster of 3 just seconds apart but only lasting about 10 seconds each, occasionally she will have seizures that last longer than that.



*What do Emma's Seizures look like?
Sadly I hate to post seizure videos but I think they help teach people about epilepsy so I have posted some below if you do not want to watch them I understand they are not easy to watch. Emma has exhibited many seizure types and they all look different. I don't have recordings of them all but here are a couple of them.....

WARNING GRAPHIC CONTENT NOT EASY TO WATCH!

Embrace Life Foundation:

I am so excited to share this with you all. So back in January when we started to look into intense physical therapy and learned it was $6,000 and our insurance wouldn't cover it, well it really made my brother upset. He was frustrated and heartbroken so he reached out to me and said lets do something this is not ok Emma needs this. In the next week or so he called and said let's make a foundation in honor of Emma so her legacy will always live on. He wants to help Utah Lissencephaly families and others with brain disorders to be able to reach these unreachable things that our children need but can't due to insurance coverage. This foundation is hoping to help with therapy, medical supplies, medical devices, anything to help make life easier for our children. The foundation will be having their first fundraiser to help families on Aug 18th. If you live in Utah please come out and meet some adorable lissencephaly kiddos (5 of them that I know of)  as they have all been invited to attend. We want you to see the faces you will help by attending and donating to these families. If you do not live here in Utah or can't make it but would still like to donate here is a link paypal.me/Embracelifefoundatio

Follow the Foundations Facebook Page for more updates on this fundraiser event and many more. Here is a link to the page https://www.facebook.com/Embrace-Life-Foundation-827189144098414/

Family Pictures June 2017:

We have been wanting family pictures since the girls birthdays in March but Emma was hardly awake and so we didn't want her to be sleeping. Well Flash forward to June 19 at about 8:30 PM when I see a post on The Angels Hands Foundation page asking if there is a family that could go for family pictures the next night at 5:30 PM. I ran to Brandon begging please please this is our perfect opportunity Emma is awake more now and we really need them done. So in less than 24 hours we threw stuff together for family picture and let me tell you they turned out better than I could have ever imagined! Thank you Fotofly and AHF for this much needed photo shoot for our family <3 

RIDE The Brainwave 2017: 

Team Embrace Life Emma

The Brainwave is a fundraiser put on by Children and The Earth. Emma's team is made up of 5k walkers and motorcycle riders. This year her team was better than last year and we hope next year it's even bigger. We want to thank all of you that participated this year whether it be in person or virtually.  We had so much fun getting out with family and friends to support Emma and other children with life changing illness/diagnosis. Remember how I told you Emma's Drs are amazing well I have to give a shout out to her pediatrician, Dr Richard Greenberg, he and his family came out to support Emma and walked the 5k with us. Emma also had the support from her Occupational Therapist Katie, we are truly blessed. Here is a little video to show you the fun we had at the Brainwave. Check out Emma's facebook page too for some of the live video feeds we did....SO FUN!