Eliana's Fight

I wanted to share with You a HashTag we made for Eliana.

#elianasfight

We encourage everyone to show your support for Eliana and Epilepsy by Making a sign, wear purple , leave eliana some words of encouragement , make Eliana's name or the Epilepsy awareness ribbon out of what ever you want, share with us how you support or whatever else you want to do to show your support for Eliana and her fight with Epilepsy! Eliana can't wait to see !!

Let's find a Cure until then Eliana fight on baby Girl!!

Share this on Instagram and twitter!!
#elianasfight


God bless !

A Different Eliana...

Throughout the course of her life I've noticed how Epilepsy has effected Eliana.
In the first year of Eliana's life she was progressing as she should. She was walking by 7.5 months talking clearly , cracking jokes and potty trained by one and a half years of age.
Two life threatening seizures later I've
Noticed a HUGE difference In Eliana.
We have notice that she hasn't been talking as much as she used to, she has developed a stutter , she can not seem to retain most information like she is very forgetful or she has delayed reaction to things. She has been evaluated by a therapist earlier this Year and we were told she is delayed in several areas.


SPECIAL EDUCATION

Now in Pre-K these delays are posing challenges for Eliana. I was though her seizures were going to be the issue but in all actuality it's the Seizure aftermath that is problematic. We have recently had and review and evaluation for Special Education Class. Last Friday was our meeting and she qualified for Special Ed. In a way it broke my heart because all I could think is how did she get here? How did our bright Eliana get o this point? Then again , I'm very grateful that she has an opportunity to get the help she needs and she will not fall through the cracks.
During the final meeting with the school district , the vice Principal of the school and Eliana's classroom teacher we found out that Eliana has been having a hard time in her classroom. What I mean by that is that Her teacher has told us she doesn't want to participate. She doesn't want to write, color or even try to play with the play dough! Her teacher also mentioned that she has concerns over Eliana's memory. She said she Eliana seems to forget things almost instantly. Which makes things challenging for Eliana just to keep up with the rest of her classmates. She had recently took a state mandated test and failed it.
School work is another issue. Eliana struggles to hold the pencil and have full control over her writing. For her homework I have to do a lot of hand over hand work because of how much she struggles writing on her own. The memory issue is something the school will have to accommodate . Her therapist (Ana calls her Miss Nay) will start to see her Ana more often to give her the help she needs.
.

Eliana will start a at-home program called Writing without Tears, that her Daddy and myself will Administer to her , she will be in a 30 speech therapy class at school twice a week and the teacher will devise a program for Ana to help remember her tasks and what stations Ana needs to be at.
In addition, I will take Ana to an additional therapy session.

Now all of Eliana's issue have been put in the forefront , and everyone see's what I see, I hope that she will be able to get the assistance she needs and will get. On the path she was on

We Love You Ana. You have came a long way , don't give up ! Mommy and Daddy will always be here for you. You're doing great!

A little cold...

Ana woke up with a cough the other day which really made my heart sink. I was hoping that this little cough was allergies and just may( fingers crossed) go away. Here we are a couple days later and the cough is still here and it's
Getting little worse. I guess it's that time of year where the colds will come and along with the colds in a Epileptic are seizures! Eliana has had so much seizure control over this past month , I just don't want her to backslide. Her little body is so sensitive She has such life threatening seizure with a simple cold.

"STARING MODE"

Honestly , every time I hear a cough or see a sniff I get so worried and get into "staring mode". Staring mode is where I literally watch her constantly. With her past Status Epilepticus seizures she had no warning of the seizure, no noise,movement, breathing NOTHING and the trigger...a simple COLD and body temp of 99.5
Luckily I was there both times to give her CPR and call the ambulance otherwise she wouldn't be here with us today. With everything she has endured I get so scared to have her out of my sight. What if the teacher doesn't react fast enough and we lose her? What if I fall asleep at night and she has her Status seizure in her sleep. Like I said she doesn't move doesn't make a noise, she doesn't even breathe ... All of these thoughts rush through my mind when something Like a simple cold presents it self. Now that she's in school it's just makes it that much more difficult for me because I have ALWAYS been here with her... Well somethings are just out of our hands and in GOD's hands. That is where I should leave it along with the worrying...

With that in mind, yes ,Mommy is going to be in staring mode until the Princess Is feeling better! Lol!


Hope everyone has a wonderful week .
Prayers for my Princess!

Let's wrap this up

Hello everyone, I want to apologize for leaving you hanging like that, the whole experience was just a whirlwind after the last post. I do want to inform you there is a bright side!

AFTER THE PET SCAN & MRI

After the PET scan the doctors decided to take her into the MRI. So for the MRI You cannot have any leads on so the had to take of her EEG leads before they do the MRI. which means more time being sedated and that made me so nervous. Eventually , like and hour later"eventually" she was finally finished with her MRI. She was wheeled up to her room and proceeded to get her leads for her EEG back on. After the las lead was placed on her she started to wake up, at this time it was already 6:15 pm. My poor baby hasn't eaten all day, I know she is starving! But It was funny because she woke up talking about the Brain instead of food? If you don't know Eliana is so fascinated with the brain and was talking about it. I really thought she would say I'm hungry! ( which she eventually did) Well, to Eliana's surprise when she woke up she had gifts! We bought her this magnetic human body organ puzzle . Oh my her little exhausted face just lite up and she miles her beautiful sleepy smile. But she was in store for more! The doctor came in and gave her his big detailed brain that came apart in quarters and had educational slides with it. Yeah our gift got tossed to the side and she was in love with her new brain. And still is to this day!

Eliana's dinner finally arrived at 7:00 and she ate it so fast! After that she played with her brain for a little while longer and went back to sleep.

SHE IS DOING WELL

In the morning the doctors came in and have us the news we have been waiting for.
The PET scan & MRI didn't show to much of anything , and they couldn't find the scar tissue that had been found last year. So once we leave they will compare the PET and the MRI and look for more clues to what is causing her seizures. We will have to send the the MRI results from here in order to find the scarring. As for her EEG. There was irritability in one part of her frontal lobe in the first 24 hours. Which was surprising because this whole time we were told that her entire brain is effected. So once they look at the MRI hopefully we can get more answers. If they do find scar tissue ,they're talking about a possible brain surgery for her so they can remove it and that MAY stop her seizures. Pretty risky.
The 24 hour EEG turned into a "over 48 hour EEG. They wanted to capture something on the EEG to see exactly where and why she was having seizures ( luckily they did) They We're in the talks about triggering her seizures by slowly taking her off her meds so they can capture her actual seizures but because she has been doing so well lately and the severity of her seizures it's just to risky and they decided not to do that ...whew...
Another thing, they had found out Ana has case of Anxiety. When she is around people she starts to "lock up" and begins to twist and stare and not talk just as she was having a seizure. The Epileptologist saw this for her self and though she was having a seizure when actuality the EEG didn't pick it up and she was having a lot of anxiety. She is going to therapy and I think she will eventually get better with time.
The last test they did was a blood ("gene test") test to see is she has Dravet Syndrome. Just because her Epilepsy path has followed this syndrome closely,from when and how they originated to her delays and how severe they get. They just want to start ruling things out!( prayers please)

WHAT IS DRAVET SYNDROME?
Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and  catastrophic form of intractable epilepsy that begins in infancy. Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge. Development remains on track initially, with plateaus and a progressive decline typically beginning in the second year of life. Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and have associated conditions, which also need to be properly treated and managed. These conditions include:

behavioral and developmental delays
movement and balance issues
orthopedic conditions
delayed language and speech issues
growth and nutrition issues
sleeping difficulties
chronic infections
sensory integration disorders
disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating)

Children with Dravet syndrome do not outgrow this condition and it affects every aspect of their daily lives.

Unless a cure or better treatments for Dravet syndrome and associated epilepsies are found, individuals with these disorders face a diminished quality of life. Current treatment options are extremely limited and the prognosis for these children is poor. The constant care and supervision of an individual with such highly specialized needs is emotionally and financially draining on the family members who care for these individuals.

Prayers for our Ana that she doesn't have this!

TIME TO GET DISCHARGED

Well upon discharging we found out that some wrestlers from the WWE wanted to stop by and visit Eliana. Let's just put it this way , Eliana go very overwhelmed and they quickly I had to leave the room!. Lol. But they did give her a plush toy, I thought that was nice ( which she eventually gave it to her brother, I think it brought back the memories. Lol)

WWE visit UCLA Mattel Children's hospital

Overall this trip have us some answers and Piece of mind. However , because Eliana's seizure are so detrimental and life risking she will be on medication for the rest of her life. But it's ok , because me and her daddy will do anything we can for her.

❤ Eliana we are in this Journey together . We will ALWAYS be here for you, you will never be alone, we will be holding your hand along the way. Every step Eliana . You're such a strong person and We admire your strength and your upbeat attitude to keep laughing and smiling throughout it all. Mommy and Daddy love you dearly!

Everything UCLA has given Eliana 

 

 I'm Home! YAY! 

In the taxi. Worn out after a week in the hospital 

WWE CAME WITH PRESENTS 

The brain and teddy she got 

WHEELING HER BACK TO THE ROOM 

 

 Poolside in L.A

  

After the PET & MRI 

WWE gave Ana is plush toy 

Making a wish leaving the Hospital 

 WWE Came with gifts 

 

Anatomy 

Her gift from DIVA & Hornswoggle  from the WWE

Getting her leads put back on