Eliana's Journey With Epilepsy: 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