Elijah entered this glorious world on
September 4th, 2001. A week later,
9/11 happened, but it was also the beginning of a long journey for Eli. He
began to have these odd shaky movements in his right leg. At first I
actually thought it was my cell phone going off and vibrating on my side,
but it wasn’t, it was my baby. I thought it was strange, but didn’t really
pay much attention to it. I casually mentioned it at his well baby check up,
and the Dr said baby’s often do weird stuff because of their immature
nervous system. Good, I thought, just what I wanted to hear. I certainly
didn’t want him to tell me something was seriously wrong.
At first these events were very sporadic and very short. However, as time
passed they became very noticeable and lengthy. We couldn’t ignore them
anymore. All along in the back of my mind, I knew what it was but I wouldn’t
accept it. By the time we got in with the neurologist he was having full
blown tonic-clonic (grand mal) seizures. Immediately he was admitted and ran
through a battery of tests. He had his first brain MRI at the ripe old age
of 4 months. He also had a lumbar puncture, EEG, about a gallon of blood to
run every imaginable test. The results crushed us. They said that Elijah’s
seizures are coming from the left temporal lobe and are the result of a
lesion in that area. The only hope for a seizure-free future is a invasive
surgery to remove the left temporal lobe, hippocampus, and amygdala. We were
so not ready to even entertain that idea.
We decided to try the medicine route to help control these seizures that by
this time were happening every single day, multiple times a day. When I say
we tried, we tried every single drug out there, but to no avail. None of the
anti-epileptic medicines completely controlled his seizures. Being on such
high doses of meds, the effects on his cognitive ability were becoming more
obvious.
In early 2006 we decided to venture down that scary surgery road. The first
step would be more tests including a PET scan, MRI, EEG, and SPECT to
determine if he was indeed a surgical candidate. The results showed that he
was not. We were nervous about the possibility of a craniotomy, but when
that option was taken away, I saw Elijah’s future go down the drain. It was
his only hope.
The neurosurgeon recommended that we implant Elijah with a Vagus Nerve
Stimulator (VNS). It is an implant in his chest similar to a heart
pacemaker, except it's for the brain. (SEE
PICTURE) The device is little bigger than a 50 cent piece. Then another
incision was made in his neck to wrap a wire around the vagal nerve. The
device works by sending electrical impulses to the brain in an effort to
offset the abnormal discharges that spark the seizures. The device runs 24/7
automatically. The settings can be changed at a routine neurologist visit
via a handheld programming wand.
I forgot to mention, Elijah’s brother
Fletcher, also has the VNS. That’s why I was in such denial at the time.
I absolutely couldn’t believe that this nightmare was happening all over
again.
Despite everything he endures on a daily basis, with no end in sight, he is
very happy. Elijah gives the best hugs and sloppy kisses. He loves PB & J
sandwiches. Believe it or not, he prefers the old school cartoons versus the
new age stuff. Nobody comes between Elijah and his Tom & Jerry episodes.
Abilities:
See: Yes. Hear: Yes. Talk: Yes. Walk: Yes. Read: Not yet. Use hands: Yes.
Siblings:
sister Aiyana, age 14
brother Fletcher, age 12
brother Carlton, age 11
Child's Interests:
Elijah likes anything Spiderman, Batman, SpongeBob, LOVES Tom & Jerry, Match
Box cars, motorcycles, dinosaurs and loves to play basketball and football.
