Early morning "pokey"

Eliana was woken up early to start her day. First thing on the list: nothing to eat by mouth until after 1:00pm 2nd thing on the list get an IV started ( too early in the morning to get a "pokey") Like always Eliana was very brave and compliant. She didn't move and cried a little bit. They got the IV in quickly without a hitch. Soon after the IV kept leaking fluids and blood. Nurses were in the room all morning trying to fix the faulty cap... All 3 of them . Yup, had to change Ana's tubing and caps on her IV three times! Luckily, they didn't have to re-stick her. Several doctors came in throughout the morning explaining what was on the agenda and seeing how Ana did overnight. Which she did wonderful by the way.

THE EPILEPTOLOGIST

Mid morning the Epileptologist and another doctor came in to let me know Ana has done pretty well. There is some spikes on her EEG in her sleep but overall it's looking good so far.

What's the GAME PLAN?
Ok, here is what we know so far, at 1:00pm Eliana will get her PET Scan . They will inject Ana with Radio Active glucose (super cool sugar in other words) they will watch how it travels and breaks down in her brain for 30 minutes and then she will be sedated for the remainder of her PET scan. Then they will remove Eliana's leads that's connected to her head for her EEG and get her ready for her MRI . She will be sedated for the MRI as well. When those procedures are completed she will be reattached to the leads To resume the EEG.
The doctors are in the talks of provoking her seizures by weaning her off her meds. As well as checking into the possibility of something else wrong that could be triggering her seizures , delays and looking into her being a candidate for brain surgery.

UPDATE:
We are in the Neuro Diagnostic Suite
Eliana had done great up to the time where she had to be prepared for the PET SCAN. She held up as long as she could tucking those feelings of unknowing and being frightened down but when push came to shove she broke down. When she was placed on the "stretcher bed" in the PET scan is what triggered her to cry then they administered her anesthesia it burned her . She was screaming for me ( I was next to her holding her hand) and saying she needed me. I felt horrible for her, she's hungry , scared then to fall asleep on that note just broke my heart. She quickly fell asleep, she was awake for less than 30 seconds after the anesthesia was administered to when she fell asleep. The Anesthesiologist wouldn't allow anyone in the room. So I'm now outside waiting on my Princess.

** You're doing great Ana ! Your just so STRONG and BRAVE baby. We're almost done with all of this. ❤

Up early in the morning to get a IV

SILLY GIRL PUT ON HER BABRIE'S TIARA BEFORE HER PET SCAN 

HER FAULTY IV CAP AND TUBING

WHEN SHE FELL ASLEEP FOR THE PET SCAN 

BEFORE HER anesthesia

HER "Pokey"

RIGHT BEFORE SHE FELL ASLEEP FOR HER PET SCAN

Eliana's admission and 24 hour EEG

"Eventful" day will not begin to describe Eliana's day today. Started early with yummy breakfast and. Fun ride in the Taxi all the way to UCLA Hospital. Admission took 2 hours! Luckily Eliana had her doctor kit and her teddy , "Doc" near with her to keep her busy. After being admitted in We had to wait an additional hour in which time we got a bite to eat. That was definitely a highlight of Eliana's day:-) because when we went out to eat there were doctors everywhere, Eliana was so overwhelmed with excitement , she would say ," Hi Doctors ,I'm a Doctor too!". My baby girl was just so excited,for anyone who knows my baby you know she wants to be a Doctor. I'm glad she will always have this memory in her mind and her heart. After lunch we went to the gift shop where she found it... Yes" IT "... A doctor scrub outfit and doctor kit. That was another highlight of her day . Of course we bought it

          Now to the dirty work
Admitted , on to the pediatric ward. Ana dressed in her scrubs and was ready for her evaluation and to be hooked up for her 24 hour EEG.
The nurses were so nice and took great care of Ana. After being hooked up to the EEG for about an hour several nurses and doctors came in. The doc evaluated the EEG and noticed some abnormalities but nothing "major" and we would the full reading tomorrow. Ana was very over whelmed and stopped talking, stiffened up and had lots of jerks and shoulder shrugs... Luckily it was taped And a doctor did witness her Episode.  It took Ana a while to come around and be herself again , but she came Around:-). The nurse ended up bringing Ana a gift , making her a name badge and bringing some yummy ice cream. ( ice cream always makes everything better)
Now we sit and wait.

Tomorrow early Morning she will not be able to eat after 6:00 am because she has a PET/CAT scan and following that will be an MRI. She will be sedated for those procedures:-(
So, that means early morning poke with a IV Needle. we may have to do some
Genetic testing and forced seizure activity but we will find all that out tomorrow.
Until then , have a Great night and we'll have updates tomorrow !

Good night my Eliana, you've done great today and your strength never seizes to amaze me sweetheart! I love you with all my heart night-night

So far...

Yesterday was quite a day! Started bright an early, off to the airport. Eliana was a little nervous but I think her excitement took over once she found out that she was going to be in a airplane high in the sky! Eliana did remarkably well, and we were able to board first on every flight! When we flew to Phoneix there was a cart there waiting for us so we got on the cart and Zoom we were off ago the next gate. Eliana really enjoyed the ride, she would occasionally wave at people like she was on a parade float, lol. When we got to our gate we had a 2 hour layover which was kind of overwhelming for her because of all the people around her. She would want to go to the bathroom a lot just to get away from the crowds. Once we were called to board Eliana immediately took the window seat buckled in and was ready for take off. Once our plan set off for its final destination I noticed Ana having some mini spells and tugging at her ear.m she developed an ear infection earlier in the week and that really. Bothered her in the flight...soon after her spells she immediately feel sleep for the entire 1hr 15 min flight. Once we landed in LAX she was ready to go again! The cab drive was exciting g for her and the change of scenery was interesting . Once we got to our hotel we ordered pizza and had a fun girls night inn! She jumped on the beds gave her little bear "doc" it's nightly check-up and watched Stars in Earn Stripes( I think that is what's it called) Overall she had a eventful day!
We will wake up early and prepare for a day of tests and procedures. GOOD LUCK ELIANA, your going to do GREAT!!!

I love you  xoxoxo

Boarding the plane

On the cart..zooming through the airport

 Looking at the clouds 

On my second flights

IT's been a long day , time to rest with her teddy bear" Doc"

Posing in LAX 

Time for Pizza 

In the cab 

 Flight attendant gave her wings! 

 PIZZA HUT!

Nap time and night time not so restful after all...

During a typical "nap time" we lay our kids down and put them to sleep. Then we go about watching our favorite show we misses or clean the house in until our little one wakes up.
Sure that's typical in a typical household... However , living with someone it's not that easy.
When Eliana was three weeks shy of her 1st Birthday, she suffered from a Status Epilepticus seizure in her sleep. Yes, in her sleep. At 9:00 at night while everyone was asleep including me Eliana had her very first seizure. By the grace God I woke up and just got up and checked on Ana in the dark, placed my hand on her chest and just knew something was wrong. I got up to turn the lights on and I was not at all prepares foe what my eyes were going to see. My baby, Eliana, was a blueish/purple color. Her eyes were fixed to the upper right and was making the softest almost muted
Grunting noise. She wouldn't snap out of it I grabbed her held her, prayed and nothing would snap her out so instantly my father and I started CPR not knowing that would've been a contributing factor in Saving her life.
From that night on I have never slept well at night. My Eliana still sleeps in bed with Mommy. I keep her close with my hand on her chest so
I can feel and hear her breathing. I'm always worried to actually "fall asleep" because what if I don't wake up when Ana is having a seizure like I did the first time, just the thought of that and waking up to my worst nightmare is something I just can't bare to think about. It's so scary to fall asleep, everynight I wake up several times to check on her, I feel my daughters every move , I hear every sound she makes... I feel like I'm always awake waiting for that "bad seizure" to hit. Every morning I wake up nervous , like that ball in your throat and my stomach in a knot because I don't know what I will wake up to in the Morning. Just to wake up to her saying "Momma , get up " ( or something like that) is the best way to wake up because
I don't have to wake up nervous or scared or afraid of how I'm going to find her.
Nap time isn't any easier , I lay my Ana Down for a Nap and mist times
I will just lay with her , awake, and
Making sure she's ok. If
I don't lay with her for her nap I'm constantly checking on her. I don't ever want to much time to pass by where it would be "too late" if she was to have a seizure.
As I'm walking Down the hall To check on Eliana, I always have my phone in case I have to call 9-1-1 , I slowly walk in to the room with my heart racing, my stomach in a knot ... I check on her and relief, she ok. A few minutes later the whole Process starts all Over. It really takes a toll on a person to live like that everyday...

Epilepsy doesn't only effect the
Person with Epilepsy it effects caregivers and the family and friends
Around them. You never know when a seizure will present it's self and you always have to be prepared day or night. It's draining, it's stressful , it's scary it really makes you appreciate the small things in life that we often take for granted... What would I give to find a cure for Epilepsy ! So my daughter and everyone who suffers fro
It could live a "normal" life.
I know my baby get tired of being always watching and asking "are you ok?" One day my baby will grow up and will want her space, It's terrifying to me to give her That space, to have her sleep in her own room or have sleep overs. I have saved my daughters life twice because I have ALWAYS been there...
We need to find a CURE for Epilepsy I love my daughter , I will always be here for her and
I wish I can give her the greatest gift of all , A Cure. But we can all help and
Find
One together if we just get educated and spread awareness!

Check out Eliana's video on YouTube
Eliana's journey with Epilepsy

Eliana , sweet dreams baby! I love you with all my heart!

Tomorrow we will be on our way to get some Answers! We'll Keep you posted

About Eliana

My Eliana... Where do I start to tell you about her... My Eliana is 4 years old, she is the youngest of our large family of 8 kids. Eliana may be the youngest but she is by far the strongest person in our household ( including the parents lol)
You see Eliana has Epilepsy , she was diagnosed with Epilepsy in 2010 at the age of two. When she was finally diagnosed it was ALMOST to late...when she was Diagnosed with Epilepsy she has suffered her second Status Epilepticus seizure which nearly killed her and many absence seizures, up to 50 a day. Her Status seizures are non-convulsive, she doesn't make noise, she doesn't move she just lays there and stops breathing... Luckily I was there , performed CPR that helped save my baby's life.
Since being diagnosed with Epilepsy, Eliana has gone through so much! Far more than I , myself ,an adult could ever imagine to endure. Eliana has gone through many EEG's, MRI's, lab work, occupational therapy, physical therapy, neuro-feedback monthly doctors appointments and been through so many different medications and had to suffer through all the side effects... But ,at the end of the day she has never complained. She always has that beautiful smile of hers across her face.
The hardest thing in life is to watch your child suffer and not be able to help or take that pain away. For instance , every time we take Eliana to get blood drawn she will cry , but she will never fight them, she will have her arm there, she will let the tech draw blood, although crying the whole time but she will not move, she will not give them a hard time. When it's all over , she will say "Thank You". Yes, it's sad to the tech that has to draw her blood, but it just shows my baby understands that this is her life, this is what she has to do to get better , and she knows they are all in this to Ultimately help her. It breaks my heart to see her endure ... All we can do is be strong for her...as much as I try I don't think I could ever be as strong as her... I Love you Eliana