I've been thinking about writing this email for over
two weeks now, but have had a hard time deciding what
to write. Two weeks ago yesterday (April 9) marked
the one-year anniversary of Eliza's homecoming from
the hospital, which seems an occasion worthy of an
email!
Many of you who don't see Eliza often may wonder what
she is like nowadays; she's certainly very different
from the baby we brought home a year ago. She now
weighs almost 23 pounds, about average for a
fourteen-month-old, and is around 28 inches long, on
the short side for her age. This combination makes
for a pleasantly plump appearance! Her head has not
grown since her shunt was placed last May, which means
it's quite small for her age, but I don't think the
smallness of her head in proportion to her body is yet
very noticeable. Her hair has gotten very long, now
falling in golden ringlets well down her neck in the
back and long enough for a small ponytail on top of
her head! She does not yet have any teeth, though a
few seem poised to break through any day (and have
been so for weeks now). I have attached a recent
picture of Eliza and Luke together; you'll notice
their coloring is very different, which will only be
exaggerated as Luke spends more and more time out in
the NC sun!
The first question most people ask about Eliza is how
frequent her seizures are now. This is a very
difficult question to answer, as the frequency varies
widely. When awake and stimulated, she may seize as
often as every five minutes, averaging closer to every
fifteen. When she's sleeping, Eliza sometimes seems
to pass a couple of hours without seizing, though as
her seizures can be completely silent, we can never be
sure whether or not we have just slept through them.
The severity of her seizures also varies; many involve
loud screaming and vomiting, others are quiet and seem
barely to faze her. The vomiting has definitely
increased recently; some nights she may vomit (as a
result of seizing) as many as ten to fifteen times,
and it's not unusual for her to have trouble clearing
her airway after such an incident. We've been assured
by her neurologist that, unfortunately, vomiting is a
common result of seizures and that there is nothing we
can do about it.
Eliza has just this week overcome her first cold,
which is remarkable in itself, as Luke had had a dozen
colds and half-dozen ear infections at least by her
age! We're grateful that the congestion doesn't seem
to have adversely affected her breathing at all,
though I suppose it remains to be seen if all the
congestion will clear up completely.
Eliza no longer smiles, or rarely does so, at least.
She often seems very tired and keeps a schedule
resembling a newborn's more now than before: sleeping
on and off for varied amounts of time without a
predictable schedule. She does sleep more at night
than during the day, though, which is convenient for
us! Eliza is still fed very slowly, overnight; her
feeding pump delivers special formula directly through
her gastrostomy tube (in her stomach) from 4pm until
7am. She is only on three medications: Klonipin (to
help her sleep) and Reglan and Prilosec (for reflux).
We also have Valium to give her on especially bad
nights when she's unable to sleep due to frequent
seizures; we've only had to use this once thus far.
She still receives physical therapy twice a week for
about an hour each visit, which she tolerates well.
Eliza does not cry and has not done so since last
August. Many people have trouble grasping that fact,
but it's true: she does not cry. In fact, as the
doctors predicted, she does nothing voluntarily and
would rarely, if ever, even move if not for the
seizures. This makes it hard to know how to interact
with her sometimes, though she does still seem to be
most comfortable when she's held, so we do that as
much as possible!
Luke remains a devoted big brother, gentle and kind to
his sister. He explained to Grandma 'Cinda on her
recent visit that if you kiss Eliza while she's having
a seizure, she is less likely to throw up (it does
seem sometimes to help her avoid gagging to comfort
her while she seizes). He's very good at identifying
seizures and particularly those that may cause her to
vomit, which is an especially useful skill when
they're together in the backseat of the car. Eliza
doesn't go with us too many places, usually just
church on Sunday, doctor appointments, and the
occasional family outing. Sam's sister Sylvia is
still living with us, so Eliza often spends quiet time
home alone with Sylvia while we participate in
activities not suited to Eliza's sensitivity to
overstimulation.
By the way, to Santa's elves (whoever you are...and
we're still trying to figure that out!), we remain so
grateful for all the gifts you gave us and which we
are still enjoying. We can't wait for the pool
membership to start next month!
As we lavish whatever love and affection we can muster
on Eliza, we struggle with her inability to respond.
It is not so much that we want a thank you or an "I
love you." The frustration lies more in her inability
to show or say "I know that you love me." With the
gradual disappearance of her smile, let alone the
absence of any speech or voluntary squeeze, Eliza has
no obvious way to express her feelings toward us.
As is Eliza's habit, however, she speaks compellingly
through this weakness. She speaks of a God who goes
to wondrously absurd lengths to convince his creatures
of His love--the immortal dies! And she speaks to
tragic creatures who, unlike Eliza, have speaking
faculties to proclaim Jesus Christ Lord, have all the
physical capability to love and serve in response to
His love, but neither speak nor act. May his extreme
and unending kindness lead to repentance and lives
that clearly affirm: "I know that He loves me."
Love,
dixie jax
