Let Me Tell You 'Bout My Best Friend(s)...........

I Hope as you read the title you kinda sang it too.....LOL 

As a mom I have found that I have a few "FAVORITES" that help me tremendously with motherhood. As my life of motherhood has changed since Emma was born 2 years ago my "FAVORITES" have changed along with that. Being a special needs mom has made me realize how much I count on other special needs parents to help me when Drs can't. With Emma's diagnosis being so rare, 1 in 100,000, I am constantly turning to other amazing parents for help. Well, today I am going to try and help some other mothers and not just special needs mothers by letting you in on my  "FAVORITE" things that as a mother I have come to realize I can not live without......

#1: OWLET BABY MONITOR:  

This favorite actually gets me a little emotional for a couple reasons....first of all I truly believe this monitor has saved Emma's life on more than one occasion. Second it gives me piece of mind knowing that it's ok for me to fall asleep at night because I know she is being monitored and if something goes wrong with her breathing I will know immediately. Lastly, this company and their customer service has been more than amazing to me. Below I am going to go into detail on how it has saved her and how customer service has treated us. 

my first post about the Owlet 2015

*Emma started wearing this monitor immediately after we returned home from the hospital at about 2 weeks old (after receiving the news of her rare diagnosis of Lissencephaly which is 1 in 100, 000 as mentioned above). Emma was diagnosed at 5 days old after experiencing over 20 seizures at 4 days old. This monitor was a shot in the dark, hoping to help us better monitor Emma while she was at home because her oxygen would drop after seizures and if she has one in the night we wanted to make sure her oxygen would return to normal range in a fast amount of time. Honestly, the first year of Emma's life we didn't have a lot of notifications but it helped so much with the transition to her own room. At around 2 years old Emma's monitor became even more important to us because her seizures returned and were very, very powerful up to 20 a day again. We started new meds and even started a new diet. During this time her monitor started to go off nightly and not after a seizure just randomly at night. We would pick her up, rub her chest and whatever else we could do to stimulate her breathing again. We mentioned this to our pediatrician who said lets double check with an at home oxygen test. Which showed results exactly like what the Owlet was showing us. Emma was below a safe range of oxygen at night for over 2 hours and 35 mins. For a typical person the limit to be safe is about 5 mins. This pointed Emma right to a pulmologist who started her on some meds for her lungs (which are severely damaged due to aspiration, from the increased saliva from her new medication for her seizures), scheduled a sleep study, and put her on oxygen while she is sleeping. We would have never known that Emma was having these breathing issues without the Owlet. I fear the day that her feet actually grow lol the owlet typically only goes to 18 months 24 if you're luckily. But Emma's feet are incredibly small she is currently in a size 3 sock and we have a size 4 left (only style sock wish they had it in the new style, staying hopeful they will before she gets to a size 4). I am not paid by Owlet nor do I get any perks by sharing this story with you. I am just truly a huge fan of Owlet and I owe my daughters life to them. So thank you Owlet. I pray this story makes it to you and your employees. 

IT ARRIVED!!!!

*Which now leads me to employees and customer service........When we first received our Owlet we were struggling to get it hooked up to our internet. We tried to 2 days before I decided to chat in on the app and ask for help. Which directed me to one of the head people of the company who offered to come out to my house and help set it up (luckily we got it figured out over the phone) but seriously it warmed my heart to know they cared enough to help us get is set up ASAP that they would drive to out house (Owlet is a Utah based company about a 40 min drive from our house).  A while later I noticed that the monitor would no longer connect to the base station for some reason it wouldn't even turn on. I chatted in and within 5 min they trouble shooted with me and decided we just needed a new part, which was then shipped, overnighted and on my porch in hours. Our Owlet was one of the firsts to be sold they actually went on backorder for a while so ours is the first version and still working out some kinks and stuff. Which leads me to July 26, 2017 at 11:00 PM as I am leaning against my bed holding the owlet monitor and sock in hand (that I had been working with for 2 hours) as tears stream down my face because I can not get it to charge. I would plug it in and it would say completely  charged but then I would put it on Emma and it would say battery low less than 20%. What was I going to do I need this monitor, I wont sleep without it I can't. So again I decided to chat in and talked with someone named A (yes slight humor for those Pretty Little Liar fans LOL),  who was amazing to help me and we were able to get it to work that night. But when we ended the conversation she said if you have any other issues chat in and ask for me. I felt comforted knowing if I needed help again I wouldn't have to explain it all again. I received my email of my chat transcript (which I love because it helps me to remember our conversation and keep important info etc.) Over the next week I fought nightly to get the Owlet to charge most nights it would go off at 2-3 AM saying it had 20% left but it was fully charged (supposedly) when I put her to bed. I was getting frustrated so another night as I stressed about Emma being monitored Brandon said just chat in again on the app and talk with A again. So I did and she was so helpful making it easy to get it replaced as it was under warranty and she overnighted it! So today when it was delivered to my porch it was like Christmas Morning knowing my sweet angel will once again be watched over and I can hopefully get some sleep again. So thank you Owlet and Thank you A! I am sure at this point you are wondering how you can get one so I will make it easy for you just simply click HERE!

Post from January 2017: She can sleep in her own room

#2 iBaby Video Monitor:  https://ibabylabs.com/

This video monitor has also been a huge part of us getting Emma to sleep in her own bed. We are able to watch her right from our cell phones. We can see the temperature in the room as well as the humidity in the room. But most importantly it records motion. We have been able to capture some seizure activity on the monitor and send it to her Neurologist, I am also able to go back through the videos to check if i missed one through out the night . We have also caught some pretty sweet moments between sisters who love each other more than you could even imagine. Here are some videos and pictures that we have captured using the iBaby video Monitor. Warning the video is a seizure video if you don't want to watch then I suggest you skip the video and enjoy the pictures instead. 

SEIZURE WARNING

SISTERS <3

Sleep tight love bug

These items help me sleep at night
(this picture of the owlet sock is the old version see the new toeless version above, it's amazing)

I hope that you have enjoyed reading about my favorite must haves as a mom and a special needs mom. I also hope that you too are able to experience the amazing benefits that I have by using these 2 products. I would also like to mention that both of these companies also donated their product for us to place under our tree at the Utah Festival of Trees 2016, which helps to raise money for Primary Children's Hospital and they were very happy to be able to donate. I felt blessed knowing that I loved the product but that the company behind the product is just as amazing as the product itself.

Hope you are all EMBRACING LIFE TO THE FULLEST!

Healing One Day At A Time And Then Some More......

When Emma was diagnosed every dream we once had for our newborn baby (and Ava's little sister) was violently ripped away from our thoughts and was replaced with... how long will we have with our sweet innocent newborn? What will we tell her sister? Will they have a relationship? Will she ever know how much we love her????? The questions will never end even as time goes by more and more questions come into our minds as Emma's parents, but one thing we try to remember is that no one knows the answers to the questions that fill our minds with anger, worry, sadness, even guilt at times.

Sometimes I blog/write to help remind me of our goals, our goals which consist of living in the moment and not the what ifs, or what could have beens. It is not always easy to live with that mindset, but we really try. When we go out and see family and/or friends who have little ones around Emma's age, yes, I wonder and wish and honestly I don't believe it will ever stop, but I do know that it gets easier. Yes, jealous moments happen when I wish it was Emma that Ava was playing with and holding hands with, as they run around the grass. But, then I realize Ava wouldn't be who she is and we wouldn't be who we are without Emma. We are better people and we have learned to not take anything for granted. Every moment we have is a miracle and we are so lucky to every second together that we are given.

Some days are just plain HARD, like hard like you never imagined hard. Sitting there feeling helpless as you watch your baby have countless seizures and praying she will breathe when it's over. The honest brutal truth is I awake up multiple times throughout the night either due to seizures and if not seizures just to make sure she is still breathing. Every morning I pray she is still alive. I worry every night that I will miss a seizure, one that she really needed me for.  It's hard to manage meds, feedings, therapy, Dr appts, work, and other duties of just being a mom....dance, breakfast, lunch, dinner, homework, bedtime etc. the day is completely exhausting and hard..... don't get me wrong, I am saying HARD, but NOT impossible. Some ask how do I do it?.....Well she's my child wouldn't you do anything for your child too??? My child may just need a little more and if your child needed more I promise you would find it in yourself to make it happen.

I titled this blog post... Healing one day at a time and then some more..., I did this because one day I feel like I am doing great and then BAM something happens and I could cry all day. But then something else can happen and I am on cloud nine feeling like anything is possible. Things may get easier to live with but I don't think I will ever not cry or be completely sad about Emma and what she has to endure in this life. I try everyday to make it the best it can be and do it with a smile, but I also know a good cry is always ok too. Living with so much unknown is hard but when you really think about it what is known? NOTHING...nothing is guaranteed for any of us. Sadly, anything can happen any day to any of us, but we know that and realize that much more with Emma than we would without her. The quote below says it all.....

Healing will be a constant in my life it is like an open wound that I will keep trying to heal and cover up,  but it never really ever goes away. But we try and we fight and we will never give up. I in no way ever feel sorry for us as parents and I never want any one to pity us or our family. Because we are blessed, Emma is a shining light in our family. The only thing I ever am sorry for is what she has to go through it can be painful to watch and understand. The second part that I feel sorry for is Ava and what she tries to understand about her sister at such a young age (6). For example a few nights ago she asked if we could all say a family prayer. So we all held hands and she prayed....she prayed to please help Emma's seizures get better because she misses her sleeping in her bedroom with her...she continued to pray and at the end she says again...please please help Emma I can't live without her....my heart broke, tears flooded my eyes and came rushing down my face knowing that one day that would be her reality. She finished the prayer and we all immediately held onto each other just crying. Later as I tucked her into bed we talked and I told her that we are always here for her if she ever needed to talk to us about Emma or had questions. I told her that sometimes when mom and dad are having a hard time we talk to each other and it helps us, so please come talk to us if you need us ok.... she replied ok... as we hugged goodnight she whispered in my ear mom you can come talk to me to if you need to when dads not home. SERIOUSLY you guys she's 6! How in the world could we have been blessed with 2 amazing little girls. I don't know but in those moments I heal a little knowing that we all have each other and that will never change.  

Healing happens at moments you wouldn't have expected...like this weekend even tho my niece who is only 6 months old and Emma is 2 years old, my niece played with and looked at Emma as a "typical" child. It made my heart burst to know that they too can have a special relationship. Even my nephew this weekend is opening his heart and mind to children that are different. He was so curious about Emma's feeding tube and seizures and I was so happy to talk to him and help him to try and understand Emma a little more. The next day he started asking, "Aunt Jaclyn how many seizures was that for today?' I would reply and he would say "o man thats too many" This heals me, this makes me smile that even tho Emma is 2, she is making a huge impact on so many around us. It makes my heart full knowing she's doing her job here on earth, educating us and showing us what life is all about.....LOVE!

In moments like this my heart heals a thousand times over. Seeing her happy and knowing she is loved means the world to me. For a moment she is "typical" and healing happens. 

SO FOR NOW WE WILL KEEP EMBRACING LIFE AND LOOKING FOR THOSE MOMENTS THAT BRING US PEACE AND A LITTLE BIT OF HEALING 

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! 

 

Letter to Me On D~Day....

I heard a song on the radio this week by Braid Paisley called, Letter to Me (click to hear). With Emma's D-Day (diagnosis day) approaching on March 25th, it made me start to think about what I wish I would have known then...compared to what I know now. So much was running through my mind and I thought it might be therapeutic for me to do this every year by writing a letter to remind me what I wished I would have know (good and bad). I also hope that by writing these letters it might reach someone who could use the info that I wished I would have known......

Dear Me.....

On March 24, 2015 your precious baby will start to have seizures at 4 days old. Don't be afraid....stay calm you don't want to scare Ava because she is adjusting too. When you get to Primary Children's Hospital they will admit her and run a million different tests. When they finally do an MRI you will receive the most devastating news in your whole life....your sweet baby girl may not live to see her first bday, she will never smile, walk, sit up, talk, or show any emotion. She will be severely developmentally delayed (stopping development between 3-5 months of age). When you are being told of her diagnosis of Lissencephaly be strong because Emma will write her own story she is going to move mountains. Her goals are just shifted and aren't the same as Ava's goal. Her milestones are now inch-stones and are going to be very hard for her to reach but she is going to be in Early Intervention soon and she will accept therapy and do a great job. When they ask you to consider quality of life and signing a DNR just breathe you will get through this. The Drs. that you have in your corner are absolutely amazing and will care for Emma as if she was their own child.

Birth to 2 years will be full of ups and downs, millions of heartbreaking moments, and decisions you will not want to make! However, there will be so many amazing moments...Emma will smile, she will laugh, she will sit up for about 1 min at a time. Emma will not only teach you so much in your life but she will teach the world. She will touch so many people and they will reach out to you showing their support. You will never be alone but you will feel alone at times but just remember you have so many people supporting and cheering you on.

Don't give up on medicaid and SSI they will fight you and say she is not complex enough (OMG can you believe that not complex enough). Anyways keep fighting show the world that they messed with the wrong mama bear and keep fighting for everything Emma deserves.

Be ready you are going to meet some of your best friends on this new journey, friends who will find you through social media and you will help each other more than you could have ever imagined. You will share so many inch-stones with them but you will also share so much heartache as illness can take over as well as death and you will cry as if you have lost your own child because you know at any moment that could be you. You may never meet these incredible people, but man are they your biggest support system and medical advice lifeline.

Be as open as you can with Ava, explain everything to her (except life expectancy because nothing is set in stone and no one knows everything). She is a smart little girl and she needs to understand that her sister is not "typical". She will want to attend every dr appt and thats ok she is in this "new normal" too. She hurts too and she is scared too. You will hear her whisper to Emma on occasion please don't ever die, this will shake you up because the one thing that you decided to keep away from Ava is Emma's life expectancy, but as I mentioned she is smart. You will grieve the fact that your two girls will not run together, play barbies together, have a tea party together....but let me tell you, they WILL it will just look different than you imagined and that's ok. Your two precious girls will be the best of friends and adore each other. Ava will be her biggest cheerleader and teacher.

Don't be afraid to start a blog, facebook page and instagram account because this will help not only you but others so much. This is the best way to help share knowledge about Emma and Lissencephaly. Be Emma's voice help her to share her journey to help create awareness about a diagnosis that is so very rare (1 in 100,000).

At 5 months Emma will start with a new seizure and it will be so devastating because it will be hard for you to find a med that works to get them stopped. But that is ok because it will lead you to the best decision that you guys will have to make....CBD oil. Yes! since she failed so many meds she will finally have the option to try it. It will be the best decision that you will make so far up to this point. Emma wont start to smile, or laugh, or excel in therapy until CBD oil is in her life. On a side note she will be seizure free for about a year on the oil. I wish I knew to never change your oil brand cause we will not see the same effects that we seen with Charolette's Web (this was a hard lesson).

In Oct. 2016 you will get the biggest gut feeling that Emma needs a swallow study and go with it you will save her life. Emma will get a G-Tube and I know it seems like a huge regression step but it's not I promise. It will also help later when you decide she needs to start the ketogenic diet in May of 2017.

Emma is a miracle, Emma's eye can tell you more than words could ever say. Emma will continue to surprise you everyday. Yes, you will cry everyday mourning the child that you thought you'd have but then she will get so close to rolling over you stop in your tracks and start cheering as loud as you can and forget the tears that were just flooding your eyes. Every time you see someone the same age as Emma you will get emotional but remember she wasn't suppose to develop passed 3-5 months of age. At her 2 year Evaluation with early intervention she will be at 4-5 months with her gross motor skills and at 11 months socially. She is progressing just at her own pace and all we can do is celebrate that because she is working harder than any "typical" kid her age. You are going to use words and medical vocabulary that you never knew existed, you are going to become a nurse, you are going to learn about epilepsy in a way you never imagined. Watching a child play will a toy you are going to breakdown every skill that was required for that to happen (you will find yourself doing this many times and laugh). You are going to change the way you look at the world and that's ok because it is going to make you a better person.

Embrace every moment you have with Emma and never regret any choices or decisions you make because getting stuck in that regret isn't good for anyone. Just move forward learn from it and know you are always making the decision you felt was right at that moment. You were given the best gift in the world by becoming the parent of two incredible and beautiful girls....EMBRACE IT!

Love:  Me

Trying To Stay Positive Through It All

It has been a rough few weeks

This last month and a half have been a real struggle for us....all 4 of us! We have really tried to stay positive but it is so hard when you watch your 23 month old have 20 plus seizures some days and wonder what you could have done different. Knowing that even if you could go back and change things would something else be the problem or would this have happened no matter what. Trying to pray and hope someone is listening only to be interrupted mid prayer to run to your baby to help soothe her through another seizure. Faith starts to dwindle and it is so hard to wonder how someone can let these littles suffer so much and why...why does this have to happen to her! Why is my 6 year old accustomed to watching her little sister have seizures, why does my 6 year old know what to do when she's having a seizure; she knows to tell us, roll her to her side (or make sure she is safe), rubs her chest and tells her it's ok she's there for her all while putting frankincense essential oil on her and then waving the bottle of it under her nose. When I was 6 I didn't even know what a seizure was, heck I never seen a seizure until my baby was 3-4 days old ( I was 33 not 6!) Life throws us all curve balls but sometimes it is so hard to stay positive after being exhausted and seeing no change after adding medication after medication.

Snuggling after school - they miss each other so much

We met with Emma's neurologist last week and she helped us to decide on which new med to try and which one to start weaning off since we don't want her on meds that aren't working. So we started Emma on a med called Onfi and decided to start weaning her off zonisamide. So now Emma is on Keppra, Onfi, CBD Oil, and weaning zonisamide. We had to call to get insurance to even cover this med because it is so expensive glad we finally got it covered though. We sadly haven't seen much improvement yet but we have to dose up to be at her full dose which will take 3 weeks. We are also awaiting an appointment to discuss the Ketogenic diet. Emma was starting to feel better this last week but last night 3:00 AM woke up congested and struggling to breathe, but her oxygen was 98%. Emma has a hard time clearing her throat which makes it sound like she is really struggling to breathe when in reality her oxygen is great. Sadly, she isn't feeling well again which again can result in a higher volume of seizure activity, can't this poor girl just catch a break....PLEASE!!!

We also got some bad news this last week our insurance will not cover or even help to get Emma into Intense Physical Therapy (4 hours a day, 5 days a week, for 3 weeks http://iptitherapy.com) and sadly it costs $6,000.00. I am not sure about you but we don't just have that money laying around :( and sadly we can't do a gofund me, etc. due to her social security. We are going to reach out to a local foundation to see if they can help with the cost but it's just so sad that she is double covered with insurance and she can't get the help she needs and DESERVES! We met with the therapists http://iptitherapy.com for a consultation 2 weeks ago and they really thought Emma would be a great patient and really benefit from this. Praying we can find a way to make it work.


On a positive note we got a phone call today and Emma's AFO's arrived (after a week of fighting with insurance again to cover them) we get to pick them up on Thursday. We are so excited cause she has been missing her stander and play time with sister (she couldn't use it cause she was standing on the side of her foot and it was really hurting her so these AFO's will help keep her feet aligned).

All in all we are trying to push through this rough patch and hope to come out stronger when it's over. Summer time and nice weather cannot get here fast enough. Keeping this cutie healthy is huge, with that being said remember if you are around a medically complex child please make sure you are not sick. A simple cough to you, could be a hospitalization for them. Praying we stay out of the hospital and that her seizures start to slow down.


Why, Why, WHY! I believe we will always ask WHY??? and I pray one day we will know the why and until then... we will Embrace it and never take one second for granted. Love you all!

G-Tube....good or bad...regression or progression???

Recently on Facebook I have seen a lot of people asking about g-tubes...how did you decide, when did you know it was right, how old was your child, did they regress after surgery, do you wish you didn't do it, is it hard to care for, etc..... I have also received 3 private message regarding this same issue with these same questions, so I have decided to share our feelings about Emma's g-tube now that we are 4 months into have the tube, can I just tell you our feelings have changed since October.

Emma hooked up to her pump (the pad is to protect her skin
from too much moisture

In October 2016 we had to make a very hard decision on whether or not to give Emma a G-Tube. Our hearts were so torn on what to do because Emma LOVED to eat and she seemed to be gaining weight ok, it wasn't perfect but it wasn't worry some yet either. But after her swallow study we realized we didn't really have a choice on whether or not we want to do a tube because we soon found out that her life depended on it. Emma was silently aspirating her liquids with no visible signs, which means no coughing or gagging and a huge amount of liquid was going right into her lungs. I cried for days not wanting this to happen because in my mind this was Emma's regression point, this was going to be the start of us going downhill with her diagnosis, I felt as if it was giving up on her. Well I now know I couldn't have been more wrong.......

tube with protective pad
 not hooked up to pump 

Emma's surgery took place on October 18, 2016 and today is February 27, 2017 so for  a little more than 4 months we have been giving Emma her liquids through her g-tube and can I tell you it has been the best thing for her. Before the tube Emma would constantly have a gargling breathing sound somewhat similar to what a newborn sounds like after they eat when food is still in their throat and they can't clear it.  This was the same for Emma except that her noise was caused from her liquid sitting on her vocal cords and then going into her lungs. We hardly ever hear that sound anymore unless she is sick or her reflux starts to bother her.

We were very intimidated about how to use and care for the tube but soon after she was out of surgery the nurses gave us control and made us start caring for it. We administered her meds, flushed her tube, cleaned her stoma (the tube site) and then hooked her up to eat when it was time. We also got a 30 min crash course from the g-tube specialist at the hospital. It was all a little overwhelming and scary wondering if we really knew what we were doing but in less that 30 hours hours after surgery we were heading home. When we left the hospital Emma was getting 40ml/hour so she was hooked up to the pump (feeding machine) 24/7. We didn't really like her being hooked up during the night with all the cords if we didn't have to be. So we slowly started to increase her feeds, she currently gets 7 ounces (210ml) over the course of an hour and she gets this every 4 hours with no feeds at night. She also passed her pureed thickened solids so she gets solids throughout the day as well. Emma's starting weight before the tube was 18 pounds (less than 3%) and she is now 27 pounds (40th %). This weight has helped Emma grow and become stronger and have more energy during therapy. 

still progressing in therapy

hard working cutie pie

Recently as most of you know Emma has been struggling with the return of her seizures after a year seizure free only on CBD oil. The return has really taken a toll on her body which makes her really sleepy, which in turn would make it really hard for her to eat cause she falls asleep. So she has had to take a slight break from her solids but thankfully we have the g-tube to keep her hydrated and keep her nutrition up. If she didn't have this tube I believe she would be in the hospital due to dehydration because there is no way I could get her to eat having 10-12 seizures a day (yesterday was 14!) She also had croup in December and it was so nice not to worry about keeping her hydrated and healthy.

If only we could have had this knowledge prior to Oct 18, 2016 maybe it could have saved us a million tears knowing this would save Emma in more ways than one. As far as regression...nope she still loves tummy time, and is progressing in therapy. I hope this can help even just one family to see that a g-tube is not giving up, it's giving her more.

Even big sister can help with the tube! 

She can still go in her stander and loves it

I want "tubie" your Valentine - even has the clothes for a tubie lol

still a champ at tummy time with sister reaching for a toy

The Proof is in the Oil....CBD is a Blessing.....Emma is Living Proof

If you follow Emma's Facebook and Instagram you probably have seen that Emma has been struggling with epileptic spasms seizures since Sept. We have tried adding zonisamide along with to her CBD oil but still nothing was working. So as most of you know we tried switching up the CBD oil and ordering a new brand. We got the new brand and things started to look up after about a week. The spasms were going away. But that only lasted for about 2 days and then the biggest shock happened....Emma started having tonic-clonic seizures again.

***Tonic-clonic seizures (formerly known as grand mal seizures) are a type of generalized seizure that affects the entire brain. Tonic-clonic seizures are the seizure type most common associated with epilepsy and seizures in general, though it is a misconception that they are the only type.  Emma has struggled with three types of seizures....tonic-clonic, infantile spasms, and epileptic spasms (these are similar to infantile spasms but they don't follow the same brain pattern.)***

This was the first day we started to see the seizures come back

Brandon and I were shocked and heartbroken to see this type of seizure return because we hadn't seen them in over a year. The last one she had was on Dec. 20, 2015 and sadly Jan. 15, 2017 they returned. We were so confused. Why???? Why was this happening, what did we do wrong, our hearts were breaking watching her have 6-8 of these a day, they were wiping her out she could barely stay awake. The biggest problem with that is that Emma's seizures happen during her sleep/awake cycle so by not keeping her awake due to seizures it was actually causing more. Finally, late one night as I was crying myself to sleep begging and praying that Emma will get a good nights sleep without seizures. Something clicked in my mind and I ran to the fridge, where we keep the oil, and I grabbed both bottles of oil (the old and the new). I started reading everything on the bottle, including the fine print and this is where the story takes a huge turn. I read that the old oil had almost DOUBLE the cannabinoids than the new oil.....OMG my poor baby is having seizures due to the fact that she is getting half the dose of CBD oil than she was before. My heart was aching this was all my fault that this was happening. I didn't even think twice when we switched oils I just followed the new dosing info
for the new oil. A hard lesson learned but it has brought so much knowledge, like they say you never learn if you don't make mistakes. So lesson learned and we are so happy that we did.

So here we are a week into making sure Emma is at her correct dose of CBD oil and it's working. It's working so well that both types of seizures are going away. In the CBD world there is something known as a reboot, this is where you stop the CBD oil for 24-48 hours and then start dosing again at the dose you saw the best results with. So instead of being too hard on ourselves we are considering this a little (big) reboot.

Without the oil I can't even imagine what Emma's life would be like. If you think about it on half her dose she was having 6-8 seizures a day, can you imagine if she wasn't on it at all??? We fear the reality of if she didn't have access to CBD oil, these seizures could take her life. Some may wonder why not prescription meds well here is why.....it took Emma 8 weeks to get to her full dose of a seizure med that didn't work anyways. So for 8 weeks poor Emma has still having seizures just as many and just as intense. However sadly she still got all the horrible side effects of these prescription meds...cranky, tired, and tummy problems. This happened with 3 different meds taking forever to get to full dose and then not working. Emma is currently weaning zonisamide (since it didn't make even an ounce of difference) and we are seeing the happy girl coming back to us. At one point Emma was on 3 different seizure meds at one time and we didn't have close to the results that we see with CBD oil. We are happy to say that soon again she will only be on CBD oil like she was prior to Sept. 2016.

I hate to say things like this but here goes......here is a list of Emma's seizure activity....
Jan. 15-Jan. 22: on average 6-8 a day (on half dose for about 2 weeks at this point)
Jan 23: 6
Jan 24: 5
Jan 25: 4
Jan 26: 0
Jan 27: 2
 *Emma's last seizure was Jan 27 at 8:23 PM and it is currently 4:55 PM on January 29th

  ****KNOCK ON WOOD****

As you can see CBD oil is a true blessing, it is a natural medication that has zero side effects and is helping our child gain her life back. As we have said before.....

 *CBD OIL IS NOT ONLY LIFE CHANGING BUT LIFE SAVING!!!!*

We pray that more and more people can gain access to CBD oil or medical cannabis. Everyone deserves the choice on how their diagnosis should be treated and with what form of medication....yes this is a MEDICATION! Please Share to create awareness for CBD oil! FIGHT FOR ACCESS!

Finally seeing smiles again over the last 3 days!

*We pay for Emma's CBD oil all out of pocket. We have started to sale t-shirts to help us with the cost of the oil. This fund is currently still open for about 24 more hours (it will end January 30th). Thanks to all those who have purchased an Embrace Life Emma shirt. Creating awareness by wearing your shirt on Feb. 28th (Rare Awareness Day), March 26 (Epilepsy Awareness Day or Purple Day), if you plan on attending the Brainwave on Team Embrace Life Emma, and lastly just to support and create awareness for Little Miss Emma. http://bonfire.com/embrace-life this is the website that you can purchase your shirt from...so many choices of style and colors, even youth sizes. Thanks again for you continued support.

Shirt Options - click link above to see more 

EMBRACE LIFE

Amazing End to 2016, Bring on 2017

Last time I blogged was November 7, 2016. So many incredible things have happened since then, as well as many hard challenges too! I will do my best to touch on everything that has happened in the last 2 months.

In the last post I had talked about Emma having an EEG and sadly it was not as great as the last one in April. This one showed increased seizure tendencies. We had tried playing with the dosing on her CBD oil over the last little while and the episodes were still happening so sadly we knew we had to try an anti-seizure med and we did not want to go this route but at the same time we can't watch our baby have these seizures anymore. We chose a medicine called zonisamide/zonegram because it previously helped her infantile spasms the side effect was she stopped eating. Within 2 days of starting the med previously she went from eating 25 oz of milk to 6-8 oz in a day! It was scary, but this time we can control her feeds with her G-Tube (I will find positives of this tube if it kills me). The plan is to increase the med half a capsule a week up to 2 capsules, well we got there and there was no change in her seizures :( Her dose can be up to 4 capsules so that is where we are headed, she is currently at 3 and all I can say is my baby girl is very cranky and not the same I hate it. We have talked with some friends who also use CBD oil and we have decided to try a new strain of oil called Palmetto Harmony, we can't wait to get it in the mail.

The week after the last post things started to fall apart and then a miracle happened for us, here is how it all went down......Monday morning I woke up to make Ava a waffle and to my surprise the waffles were defrosted, my heart sank everything in the freezer was done for :( the fridge seemed to still be running and everything was still very cold. The day went on and it still was working fine so we figured it was just the freezer and we had a freezer outside too so no worries. The next morning Brandon came in at 4:30 AM (when he leaves for work) and said I brought in a cooler cause the fridge isn't working now! Since he had to get to work to be home for me to go to work I got up and emptied the fridge into the cooler with ice packs. Phew that was a close one all food was saved! I called my mom that morning and told her it looked like we were going to have to go get a new fridge cause ours was OUT! Later that day she called me and said Michele her (use to be our) amazing nail tech had a fridge in storage and we could have it but they couldn't meet up with us to get it out of storage until Thursday at around 11. Brandon and I talked and we decided we would wait cause that would save us a bunch of money and help out a lot right before Christmas. On Wednesday was when we found out about Emma's seizure activity and that was a rough appt. for us, we hated to put her back on meds. Thursday morning I woke up so excited to get a new fridge as I walked into the kitchen and all the sudden felt water everywhere under my feet!!! OMG THE COOLERS STOPPER WAS BROKEN!!!! The ice was melting and water had flooded the kitchen I didn't know whether to laugh or cry, I kinda did both as I grabbed towel after towel to clean up the water before I had to wake up Ava for school! To top it all off it was Parent Teacher Conference week (the longest week of your life as a teacher LOL). After I got it all cleaned up I went out to the garage to the big freezer to get a waffle as I opened the freezer I bumped a HUGE jar of pickles off the shelf and it broke all over the garage (this time I cried!) After getting everything cleaned up and Ava off to school I called my mom and told her I give up and I am waving my white flag! Little did I know what was in store for us at 11:00 that day, and it wasn't a new fridge it was much, much more!.....

It was finally almost 11:00 Brandon was home and ready to go get the fridge and I was ready to go to the pharmacy to pick up Emma's new seizure med. I was getting Emma hooked up when the doorbell rang so I had Ava go answer it cause it was Grandma and Grandpa. As she opened the door I heard a voice I don't recognize saying is your mom and dad home, then I hear my parents. I clamp Emma's line and I go around the couch to the top of the stairs and I see a news camera, balloons, flowers, my parents, my sister and many others I have never met (but they were angels sent to us, I know it!) See the link below for the whole clip of our SURPRISE HOME MAKEOVER!!! Makeovers From the Heart (RC WILLEY and CityWide Home Loans) gave our home a complete makeover! By the way I am typing this on the most comfortable couch ever!

Here is the surprise:
http://www.good4utah.com/news/local-news/group-surprises-deserving-west-jordan-family-with-home-makeover/607727549

Here is the result of our home makeover. We still sit here and wonder how did this happen to us how did we get so lucky! Thank you to everyone who made this happen for us we will never forget your kindness and love!
http://www.good4utah.com/news/local-news/tears-of-gratitude-west-jordan-family-sees-transformed-home-for-first-time/616692521?utm_medium=social&utm_source=facebook_ABC4_Utah_-_Good4Utah

So we packed up our whole house (closets and all) in 4 days and put everything into PODS and we went to live with Grandma and Grandpa Allen for 3-4 weeks.

This is sweet Ava getting Emma hooked up and unhooked from eating while we are busy packing up the house. This girl is amazing she loves learning how to take care of Emma. I think I see a medical future somewhere in this little ladies life.

Here is a fun little video I put together of our house with before and after pics:

Thanksgiving was great we got to spend time with both families and we even got a huge surprise there too! Our nephew who was on a mission in Brazil was sitting in the front room as we came in for Thanksgiving and he wasn't suppose to be home for 5 more days what an exciting moment for him to meet Emma for the first time!

WELCOME BACK ELDER ALLEN

Emma has also finally been able to use her stander YAY!!! She is surprisingly doing a great job too. She currently is trying to stay in the stander for 30 minutes a day. We will hope to increase that as soon as her body adjusts to standing. 

such a look of determination 

One year ago we were just trying to get her to open her hands to grab a toy and now she's in a stander and banging toys together. Such progress in one year

Of course big sis always makes stander time better :)

These two <3

 After Thanksgiving our family always does a tree for the Festival of Trees where we decorate a tree and people bid on them then the money goes to Primary Childrens Hospital (our local childrens hospital). The Theme of the tree was "You are my Sunshine" When I was pregnant with Emma, Ava really wanted to learn how to sing this song so that she could sing it to her when she was born. We practiced every night before bed and then she would sing it to her while still in my belly. She even sang it at Emma's first bday party. That is a video you must see Check out First Bday post the video is at the bottom of that post.

Emma was so excited to here our tree sold for $2100.00 

All our fun festivities at the Festival. Emma even had her face painted for the first time

We also filled our map we are so excited that we have created awareness in all 50 states. It's a start :)

My heart is exploding!!!!

On December 5, 2016 Emma had a follow up appointment with her ophthalmologist. The good news is her previous astigmatism has completely gone away the bad news is a new one has developed. This astigmatism will limit her processing in her brain of what she sees so the Dr recommended that she get glasses to help clear up her vision and help her process what she sees better. So her glasses aren't because she can't see but more to help her with the astigmatism. We got her glasses and we have been trying really hard to keep them on her. But with her recent illness its been a struggle with her laying down a lot. But now that she's feeling better you will see lots of pics with these adorable purple glasses. 

We got to attended some fun Christmas parties with Angles Hands Foundation and the Mascot Miracles. 

Emma and Santa "talking"

Getting some advice from Santa

Ava, Belle and E

Emma loved the party in her fancy gold pants

Riding the Polar Express with Mascot Miracles

Polar Express with Mascots - Felix

Great opportunity for our family! Such a fun night out together 

We were also invited to City Wide Home Loans Christmas Party (these guys are seriously the greatest) this party was at the aquarium and it was so fun to take Emma in her new chair cause last time she was laying down in a stroller so she couldn't see much. This time she got to see so much and had a blast (I am thinking a future bday party might be there for 2 cuties in March)

Incredible!!! Thank you CityWide Home Loans

 Big sister had her Christmas Dance recital and she "rocked it!" She is becoming such an amazing dancer.

Our beautiful little dancer

my whole world

Emma loved watching Ava dance look at her pull herself up to watch 

Fun time getting pics with Santa

Santa fun!

 During all this holiday fun we battled a few illnesses as well between both girls! Ava had strep twice and pink eye. Emma had pink eye, ear infection, and croup that turned into a very bad cough that was accompanied by throw up almost every time she coughed. This made for some very very long nights of jumping up to catch throw up especially since she tries to swallow it instead of spitting it out, which leads to the fear of aspiration pneumonia.

Emma trying to rest up to feel better

our beautiful gift - poor sick baby girl

Overall we had a fantastic Christmas celebrating with family and friends trying to keep as many traditions alive as possible as well as creating new ones. We love love love our "new" house and it was so fun creating new memories in it this holiday season! However, one tradition that was really hard for me this year was our big family Christmas party on December 23rd every year. Emma was 3 days into croup and just not sounding good and we could tell she didn't feel well. We try to keep things as normal as possible for Ava, so Ava and I packed up and went to the Christmas party and left Brandon and Emma home. I cried so much because it hurt to not take my whole family to the party, but I felt that this again was something that was going to be apart of our "new normal" with trying to keep Emma healthy and Ava not missing out on things. Once we got to the party Ava and I really enjoyed our time together we painted, decorated cookies, and she played with cousins. We missed Brandon and Emma but knew it was for the best. 

Making cookies at the Christmas Party

Painting at the Christmas Party

More Fun Holiday Pics

this is how we do Sams Club (love my little elves)

Gingerbread house tradition

We made a new tradition....we made our own cookies and frosting for Santa!

Cuties getting ready for Santa (check out those cookies we nailed it)

Emma got a new adapted toy to help her be able to play with a toy more on her level. Even this was something Drs. said would never happen. We have been practicing for about a week and she finally played with it for about 30 min and pushed the button 4 times on her own (see video below). We are so so proud of her! I have been asked where we got this toy so I will post the link to their facebook page: Ontiveros Adaptions

Side playing 

Sitting up on my own playing (can't push and sit up at the same time yet) 

Tummy time and playing

4 years ago we started a new tradition with our family to go to Mesquite Nevada to ring in the new year. We were nervous to go this year with Emma just getting better, but decided she was acting better it was just a cough at this point. So we packed up and headed for warmer weather. We also spent a day in Vegas. Ava loved walking around Cesears Palace. We enjoyed the sunshine and some time with extended family but as Friday morning approached Brandon and I were thinking Emma needed to see a Dr her cough had gotten worse and she was throwing up much more when she would cough. So we got up Friday morning called to make an appt. back home with our pediatrician (we hate explaining Emma's condition and don't want drs to overlook anything that might be concerning not knowing what her big red flags are, most drs have never heard of lissencephaly before.) We got an appt. for 6:00 that evening so we packed up and headed home. It was hard to take that away from Ava but being the amazing kiddo she is she just said, "lets do what we have to do to keep Emma healthy". Emma's appt was very beneficial she has an ear infection and diagnosed with pediatric asthma (just like Ava) she received a breathing treatment and her cough has almost disappeared with them. We celebrated the new year in our new house with our little family. We played games, watch Fuller House, and made breakfast for dinner (my favorite). It was a fantastic way to ring in the new year.

she just had to ride the escalators that wrapped around in a circle

Check out that view it was awesome!

sleepy head

Ava soaked up every second of sun riding her new scooter from Santa

We finally attended a movie again and she didn't even flinch once or make a peep. We love our EMs for kids.

Fun times playing with cousins

her favorite part is golf cart rides

Giant head chair 

These two would definitely get a golden ticket to Hollywood....don't you think????

I lost big time at memory to a 5 year old and yes I really tried to win!

Happy New Year (watching Fuller house) seriously this couch is amazing!

New Years Eve lunch - she's feeling much better - still rosy cheeks from teething

Happy New Year from these cuties

As we look back on the last year I cannot believe the inch-stones that Emma has met and some even into milestones. She's had some setbacks with illnesses (RSV, croup, 4 ear infections), seizures and getting a g-tube but overall I can't help but look at all the achievements this incredible little lady has made. We are so proud to be her parents and Ava is so proud to be her sister helping to push her to reach each inch-stone/milestone! Thanks for cheering Emma on and praying for her. Your support means so much to us. From every like and share you have helped us help others in our same position and brought more incredible people into our lives. We may be on this rare journey but thanks to family, friends, and all of you we have never felt alone 💕😘💜❤️ we hope you all have a Very Happy New Year (a healthy and seizure free New Year) here's to 2017!!!! 

*Embrace Life to the fullest this year! Remember please share this blog,  Facebook page and  Instagram (embrace_life_emma) page we want to create awareness and meet more families just like ours!

*This week Emma has another swallow study to test her pudding thick solids and we are praying she can still have food by mouth. She also has another weight check because she might be gaining too much weight too fast with the g-tube. She went from 18 pounds (less than 5th percentile) prior to surgery (Oct. 18) to 25 pounds (40th percentile) on Dec. 6. Dr was very happy with her growth but now wants to watch it closely. I will update you on those on her social media pages sooner than on the blog again. Thanks for reading!*