Eliza update 7/28

Dear friends and family,

Boy, where did we leave off? Many of you have stayed
informed through the phoneline or the grapevine; many
more have no doubt wondered when the next email would
bring you up to speed. We are thankful for those who
have inquired out of love and for those who have
abstained, again out of love. Thank you, also, for
continuing in the mysterious and essential work of
prayer.

Eliza will be six months old on Saturday. She has
grown to exceed 15 pounds, and her height has
increased as well. Other than these physical
dimensions, Eliza shows no signs of development.
Mercifully, she does enjoy being held now--and
sometimes cannot be calmed otherwise (a mixed
blessing). With the help of a 3x/day dose of a
sedative, in addition to spending the bulk of her day
removed from all stimulation, Eliza does not have the
prolonged screaming fits she once had. Even when Luke
more-or-less gently shakes his little sister's leg
(before the powers-that-be admonish), she bears it
patiently. Perhaps it's the southern belle in her.
In general, caring for Eliza does not present
excessive physical challenges, once you get used to
it.

On the other hand, caring for Eliza does continue to
present significant emotional challenges. Anyone who
has cared for a newborn will attest to the fact that
the first month is intensely trying: here is a being
who demands all your energy, deprives you of sleep,
and gives nothing in return. Having cared for a
newborn before, I know that to survive the first month
one must keep in mind that "this too shall pass," this
baby will learn to smile, giggle, coo...and will,
before you know it, grow into someone whose company is
truly enjoyable. Eliza, on the other hand, has been
functionally a newborn (though less responsive and
with less recognition of Mom and Dad even than that)
for six months now. Six months of giving all you have
without even a smile and no expectation that this will
change--physically difficult, no, but emotionally
quite a load to carry. Add to this the cabin fever
produced by parenting a baby who is not only difficult
to take out but who makes it very clear that she
cannot handle the stimulation of going out and you can
begin to imagine the state we're in.

On the medical front, Eliza continues to have
seizures, averaging 2-3/hour, depending on the hour,
despite three anti-seizure meds: phenobarbitol,
keppra, and her sedative, clonazepam. Eliza receives
1/8 liter/minute of oxygen through her cannula. We
sometimes increase this to 1/4; other times she can
get by without a cannula at all, as you may have
noticed in pictures (link at the end of this email to
photo album--updated photos to come soon).
Eliminating the oxygen entirely would require
decreasing the sedative. We tried this once and
suffice it to say that we won't be trying it again
soon. Eliza is fed through the tube in her stomach 18
hours/day; we do not plan to resume any attempts at
feeding by mouth. She still vomits occasionally,
usually following a seizure. Her difficulty in
clearing her airway makes these occasions rather
dramatic at times. She still receives physical
therapy twice a week at our house, though we have
discontinued speech/feeding therapy and, as of today,
occupational therapy, neither of which seemed any
longer to be beneficial.

As I gazed into the beauty of a Carolina summer sky
this afternoon, wisps of clouds floating above, I
sought God's face. He directed me to lower my eyes to
see him aright. There are times to ponder the majesty
of creation and its Creator. Today, the Spirit
testified to my spirit about the marvelous lowliness
of the Son: "...one who in every respect has been
tempted as we are, yet without sin." God knows this
struggle first-hand ("every respect"!). We are
fighting an excruciatingly unique battle, but it is
not beyond the scope of what Jesus Christ faced and
overcame. "Let us then with confidence draw near to
the throne of grace, that we may receive mercy and
find grace to help in time of need."

We confess a temptation to hate Eliza, and to curse
the God who has the power to end all suffering yet
delays. We receive mercy. We desire to love Eliza,
and to praise the God who works all things for good
for those who are called according to his purpose. We
find grace to help us.

We pray that you may know the hope we have in Jesus.
In his name alone, we stand before the Creator of all
and receive immeasurably more than what we ask or
imagine, in this life and the life to come.

Love,
dixie jax

P.S. Luke continues to enjoy thoroughly his summer,
having just today spent hours slipping and sliding
down a 98-foot waterslide (with mom along for every
ride, of course). He appears satisfied with the
explanation that Eliza's "brain doesn't work," and
with the assurance that, when she goes away to God,
she will get a "good brain."

Eliza update 7/3

Feeling mostly exhausted and uninspired tonight, but
wanted to share the news: the results of Eliza's
latest muscle biopsy show that it's unlikely she has a
mitochondrial disorder, and if she does, it's a very
mild one that would not cause seizures or her other
symptoms. This is good news all around, as she'll now
take two fewer medications; also, it means her
disorder may not be inherited.

Love,
us

Eliza update 6/30

Dear ones,

Eliza passed the five-month mark yesterday...yet
another small victory for which we're grateful.

We had our initial visit with the ophthalmologist
today. She did a basic check of Eliza's eyes and
determined that there is atrophy of the optical nerve,
which connects the eye to the brain. This is
consistent with brain atrophy, as well as with damage
caused by hydrocephalus. As for what Eliza sees, the
only way to determine this with any certainty would be
to perform another test, similar to an EEG, which,
though non-invasive, would involve some stress for
Eliza and provide no information of use other than as
a curiosity. Yes, we're curious to know what Eliza
sees, but not enough so that we'll put her through
another unnecessary test. So I'm not sure what we got
out of this appointment today...except a follow-up in
four months.

That's all the news that's fit to print...

Love,
us

Eliza update 6/20

Dear all,

Eliza had a pediatrician visit yesterday. Her growth
is good: her length is starting to catch up, and her
weight gain, as many of you observed in that bath
picture, is very good; in fact, she's become a bit
chubby, a nice change for her! We're still working to
try to get her off the oxygen completely, which means
adjusting her meds a bit to see if she can be a little
more awake and still calm and manageable. Only time
will tell.

The question the neurologist wasn't willing/able to
discuss last week, our beloved pediatrician was; that
is, based on her most recent CT scan, is Eliza's brain
continuing to deteriorate? The answer appears to be
yes. Certainly, her brain looks much better on this
most recent scan than it did on the one just before
her shunt was placed, but compared to the MRI she had
several months ago now, this CT scan shows that the
atrophy has continued. This is not a surprise, though
admittedly a disappointment, as we all had hoped that
maybe the atrophy wasn't as bad as it had seemed,
maybe it had stopped, maybe having the shunt placed
and the severe hydrocephalus corrected would make a
dramatic difference. Instead, unfortunately, things
appear to be progressing as the doctors had predicted.

Scripture instructs us not to be "conformed" to the
pattern of this world, but to be "transformed" by the
renewing of our minds. If we were conformed in our
thinking to the pattern of this world, if our hopes
and thoughts did not extent beyond what we see and
touch here and now, we would live in despair. In
Christ, however, our thinking is transformed and we
live in hope. Eliza is not a terminally ill tragedy;
she is a beautiful and eternal person. As yet, we
have had only glimpses of God's purpose in Eliza's
life. We may never know His purpose in full; we will
content ourselves in knowing it is good.

Love,
us

Eliza update 6/16

Dear all,

Just a quick note: we got blood test results today
that indicate that Eliza's growth hormone levels and
cortisol levels are normal. That's a relief.

I've created an online photo album with all the photos
we've taken of Eliza since she was born; the link
follows this message. Warning: some of these photos
were taken when Eliza was extremely sick, and when we
shared these originally with some family and friends,
they found the images too upsetting to view.
Personally, I found looking back through these photos
somewhat uplifting: they show just how far Eliza has
come in the past four and a half months. Praise God
for little victories.

Love,
us

http://www.kodakgallery.com/Slideshow.jsp?mode=fromshare&Uc=x603pj9.9cvuroi9&Uy=5tsnjr&Ux=0

Eliza update 6/14

Dear family and friends,

Attached are two photos of Eliza in the bath, an
experience she actually *enjoyed* (in other words,
didn't scream through) for the first time ever the
other night!

Yesterday, Eliza had a CT scan (essentially a head
x-ray) to confirm that her shunt is functioning
properly, that is, draining the excess fluid that was
accumulating in her brain due to the hydrocephalus.
The good news is that it is working as it should. As
for any other details, the neurologist wasn't terribly
forthcoming. When asked if her brain looked better or
worse (as far as atrophy is concerned) on this scan as
compared to the last, his comment was that it didn't
look better, and as far as being worse, well, the
damage was so profound before that it doesn't really
matter. Not exactly the level of detail I was hoping
for, but he refused to be pressed for more
information. He doesn't see any reason to put her
through another MRI, so I guess we won't know any more
about the extent of the atrophy in the forseeable
future. Tomorrow, we'll start her on one more
anti-seizure medication, one that hasn't worked for
her before but might hopefully work now (not very
likely, but worth a try).

We do not yet have any results from the muscle biopsy,
and it may well be a while yet before we do. We're
told these tests can be tricky and time-consuming.
We're also awaiting blood test results checking
Eliza's pituitary function, as she has not been
growing particularly well recently.

That's all the news that's fit to print, as they say.

Love,
us

Eliza update 6/2

Dear all,

Eliza had her visit with the neurologists today, who
began the appointment with good news: no seizures
showed up on the one-hour EEG yesterday. The bad
news: both the technician and I SAW her have three
seizures during the EEG recording. What does this
mean? Surely, you can guess the answer: no one knows.
One neurologist began to suggest that, although
Eliza's recent "episodes" have shown up as seizures on
EEGs before, perhaps they're not; maybe they're just
strange symptoms of reflux. As he suggested this,
Eliza proceeded to have three "episodes" (identical to
the ones she had during the EEG recording) in a span
of twenty minutes, which the two neurologists and two
med students in the room agreed could be nothing other
than seizures. So once again, the best minds in the
business have NO idea what's going on with Eliza.

The result of the appointment, then, was an adjustment
in one medication and a referral to yet another
specialist, this time an ophthalmologist, since Eliza
doesn't seem to be able to see. And we'll go back to
neurology in a month. That's that.

Could it be a simple failure of the EEG? No one
suggested that, but I can't help but wonder. After
yet another long afternoon at the hospital (the third
this week), I'm tempted to stick Eliza's head in the
toaster to try to give her an MRI myself; that's about
how much faith I have in the medical establishment at
this point. Thus, I'm all the more thankful that, in
fact, my faith is not in the medical establishment and
never has been; it is in the Great Physician alone,
the only one who has the power to heal. So tonight,
as every night, we will continue to pray and
wait...and to be grateful for your support and
prayers.

Love,
Daniele et al