the weekend of april 15th

the day after Reagan reached her 6 month milestone.

after all the celebrating...
the wee hours of the night decided to bring a surprise to us
it was about 1:31a.m
we heard Reagan crying which is unusual
she doesn't cry or wake up in the middle of the night-cause she sleeps thru the night
so we go up to check on her and she's crying
and it's a loud, different cry
i pick her up
we turn on the lights
and she's got a glazed look in her eyes,
and her eyes are rolled back to the left,
her arms and legs are jerking back and forth in a rhythmic fashion,
saliva is escaping her mouth without swallowing,
and she wasn't responding to us calling her name, moving or touching her
we were scared.
we immediately thought she must be having a seizure
we panic and pray as to what to do
we grab the phone and call 911
what lasted 5 minutes seemed like an eternity!!!!
she finally comes to
after she somewhat choked/coughed her saliva out
we put her down and she still seemed unaware of what was going on
finally she came to
the firemen were at our door and we explain the situation
they assess her and check her vitals
they tell us it seems like it was a seizure
and tell us they can transport us to ER to get checked or we can take ourselves
we opted to take ourselves since tay and pey were still sleeping.
we called lola/lolo and they came over.
we rushed over to the nearest ER at chino valley (btw, never go there-haha)
by then it was around 330a.m.
from there we were immediately transferred to LLUMC children's hospital
we got there at about 5a.m.
after assessing and testing
we finally were admitted into a room at about 1p.m.
from there more assessing and testing
the plan was to get an MRI and an EEG
the MRI required reagan to be sedated...
being at the hospital is always a BIG waiting game
so we waited and waited
and they gave reagan an NPO status which meant she couldn't eat...
mind u it's the afternoon already on friday and the last time she ate was thurs night at 8pm
they are aware of that and say she's getting her nutrients via IV.
we were becoming very impatient and even at times came off a bit rude to the nurses and doctors
finally at just about 10pm they take her down to get her MRI done.
it took her awhile to get sedated..the liquid form didn't work and they ended up having to sedate her thru the IV
she didn't get back to the room till about 1130pm
still she hadn't eaten.
we tried to wake her to make sure she was okay and reacted well after the meds but it was hard getting her to wake up since it was already the middle of the night when she'd normally be asleep...
i was sad since my hope for her being able to sleep was diminishing.
they still wanted her to get an EEG done in the morning so they said she had til 2am to eat so she could get it done (since they supposedly still wanted her sedated).
the nurse and i tried waking her at midnight, at 1am and at 2am but she was just too pooped so we let her sleep
finally morning comes around.
the nurse says they are going to try and get her EEG done first but we didn't know what time that would end up being. we insist we want her to eat and if she needed to be sedated again (which meant no eating again) that we would opt to do the EEG as outpatient.
the nurse checked the orders and saw that it actually didn't require sedation and to her knowledge you can't do back to back sedation..so we were relieved.
what do ya know...come about 8am the EEG tech comes to our room
he preps her and tests her
meanwhile the neurologist came into the room and spoke with jino about reagan's case
the test was done at almost 9am and the neurologist dr. shu actually looked at the results right then and there
good news was that he didn't notice a lot of abnormal brain activity which would indicate seizures so we were set to go home...
he also sent us home with a prescription for anti-seizures meds which he gave us the choice to fill it or not
the neurologist confirmed reagan's diagnosis of lobar HPE.

in pediatric ER
waiting for a room and an MRI
very tired and hungry
haven't eaten since 8pm thursday night
still waiting and still hungry
finally at about past 10pm
we are en route to our MRI
after a looong night...reagan was so tired.
the next morning couldn't have come any faster and we were so glad we actually got discharge in the morning...
homeward bound
yay finally home and reunited


saturday we caught up on our sleep
and thankful we had a sunday to go to church
all was quiet till...
jino left for work on monday morning
it was about 805am
reagan had just fallen asleep on the couch next to me
then she cries that oh so unfamiliar cry
i grab her
she's havin a little seizure
i called jino and then called 911
it didn't last as long.
it was super short and quick
911 was already en route.
they came and assessed
and suggested we take her in
i didn't want to
jino didn't want to
we knew all we had to do was fill the prescription for her anti-seizure meds and we'd be ok
and we told the ambulance and paramedics that but it didn't seem to matter to them
so off i went in the ambulance
lolo came to watch the girls till my sis and mom got to the house
jino met us at LLUMC ER
praise God we were seen right away
and all was good
so they sent us home within the hour and we had to go fill the presecription
so we pull up into our driveway at just about noon
Reagan cries that mysterious cry again
i make my way to the backseat...
low and behold she was having another seizure.
i take her out, hold her and pray
this one was longer than the one from the morning
at least a minute or 2
it finally ends
this time we didn't call 911
we just knew to give her the meds already so that it wouldn't happen again

phew.
breathe.

reality has set in for us.
her seizures were the first real, tangible, physical thing that made us realize
we have a child with special needs

i know it's gonna take lots of adjusting
lots of praying

we knew she had it
but i guess we kept thinking that she'd get better and it would all go away in a sense

Reagan has a rare condition called
Lobar HPE (holoprosencephaly)
it's the mildest case of it

Lobar (mild)--where the brain is divided and there are some mild abnormalities (there is a well developed interhemispheric fissure however there is some fusion of structures). Children diagnosed with HPE may have a small head (microcephaly), excessive fluid in the brain (hydrocephalus), variable degrees of mental retardation, epilepsy, endocrine abnormalities, or abnormalities of other organ systems such as cardiac, skeletal, genitourinary, and gastrointestinal. Mildly affected children may exhibit few symptoms and may live a normal life.

The cause of HPE is currently unknown. Often, no specific cause can be identified. Suggested risk factors include maternal diabetes, infections during pregnancy (syphilis, toxoplasmosis, rubella, herpes, cytomegalovirus), and various drugs taken during pregnancy (alcohol, aspirin, lithium, thorazine, anticonvulsants, hormones, retinoic acid).

It is estimated that HPE affects between 1 in 5,000-10,000 live births. Since many pregnancies with a fetus diagnosed with HPE end in miscarriage, the frequency of HPE among all pregnancies may be as high as 1 in 200-250. Current studies indicate that only 3% of all fetuses with HPE survive to delivery and the vast majority of these infants do not survive past the first six months of life. The prognosis for a child diagnosed with HPE depends on the type of HPE and the presence of associated anomalies. The most severely affected children may live several months or years and the least affected may live a normal life span. Almost two-thirds of affected patients have alobar HPE and approximately one quarter are diagnosed with semilobar HPE.

HPE is characterized by a failure of transformation of the prosencephalon into cerebral hemispheres with separate lateral ventricles. HPE has many associated anomalies, both of the nervous system and face. HPE is also associated with malformations in other body systems, particularly when it has a chromosomal etiology. The true spectrum of HPE, its clinical manifestations, and underlying etiologies require further elucidation. Applying this knowledge to individuals and their families is of utmost importance.

we are still trying to learn more about it
be informed

here are some good websites:
the carter centers
and
families for HoPE
and
holoprosencephaly

taking it
ONE DAY AT A TIME.