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.
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!
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.
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!*
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.
