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

Eliza update 5/31

Dear family and friends,

Eliza had her follow-up appointment with the
neurosurgeon as well as a visit with the neonatologist
yesterday. As for her recovery from the surgery, all
seems to be going well. She is definitely awake more
than she was two weeks ago; unfortunately, this means
she cries more, too. The size of her head has
actually decreased, which is a good sign that the
shunt is doing what it ought to do, as is the
prominence of the soft spot on her head. Her
incisions are healing well, and we were finally able
to give her a much-needed bath this afternoon. Her
vomiting is greatly decreased, though not halted
completely. Unlike before, however, most of her
episodes of vomiting seem connected to her seizures,
which, unfortunately, appear unchanged since the
surgery. The number of seizures varies, as does the
length of time between them, but they are relatively
frequent (at least one/hr).

During our visit with the neonatologist, Eliza
underwent pulmonary function testing, which showed
that she does not need as much oxygen as she has been
receiving. So we have begun the process of weaning
her oxygen, decreasing the volume by half (down from
1/4 to 1/8 of a liter/minute). So far, she seems to
be doing well with this change.

Tomorrow, Eliza will have several blood tests as well
as an EEG in anticipation of an appointment with
neurology on Friday (the EEG is the test that measures
brain waves and seizure activity--it involves having
electrodes glued to her head for an hour or less, so
is relatively painless). On Friday, we'll see the
neurologist, with whom we'll discuss changes in
anti-convulsant medications and the possibility of
getting another MRI (brain scan requiring several
hours of sedation) in lieu of a less-detailed CT scan
(brief x-ray done while awake) as ordered by the
neurosurgeon. Since Eliza recovered well from the
sedation and ventilation after her surgery, and since
the discovery of hydrocephalus raises questions about
her last MRI (which showed rapid degeneration of the
brain, now perhaps partially attributed to compression
from hydrocephalus instead of atrophy from brain
disease), it seems like it might be useful to have a
new MRI to compare with the last. Whichever test we
decide to have (CT scan or MRI) will be performed in
about six weeks, in order to be sure Eliza's brain has
had plenty of time to decompress completely from the
hydrocephalus.

We are once again in a place of uncertainty. Two
weeks ago, before the discovery of the hydrocephalus,
one thing was finally certain: Eliza was getting
worse, and rapidly at that. Two weeks ago, what the
doctors had feared all along was in fact coming true:
Eliza was dying. Everyone assumed this was due to the
continuation of a fast-moving degenerative brain
disease. With the discovery of Eliza's hydrocephalus,
however, everything is once again up in the air. Will
Eliza continue to get worse, as predicted originally?
Was the degeneration not as bad as the doctors
thought, or in fact, never present at all? If so,
might Eliza stay the same or even improve? No one can
guess, and only time will tell. The doctors say it's
not surprising that we haven't seen positive signs
yet. As usual, though, it's hard to be patient.

"Then Job answered the Lord and said: 'Behold, I am of
small account; what shall I answer you. I lay my hand
on my mouth.'" "I know that you can do all things,
and that no purpose of yours can be thwarted."

"Humble yourselves, therefore, under the mighty hand
of God so that at the proper time he may exalt you,
casting all your anxieties on him, because he cares
for you."

Job 40:3-4; 42:2; 1 Peter 5:6-7

Love,
dixie jax

P.S. Just to re-clarify, "dixie jax" is not a prolific
e-mail writing relative. It is a nickname we have
given ourselves as the southern wing of the Jackson
Family.

Eliza update 5/21 8:30pm

Dear ones,

Eliza is home again! She had a pretty good night,
vomiting only once early this morning, so everyone
agreed she was ready to come home. Since she's been
home, she's been resting, apparently much more
comfortably than she had been in the hospital. We're
relieved to have this stint in the hospital behind us
and are hopeful that we'll all have a good night's
sleep tonight.

Emotionally, we're once again in the uncomfortable
spot of uncertainty. Just when we'd reached the point
of feeling very certain that Eliza was continuing to
get worse--and fast--all due to brain degeneration, we
learn that much of her trouble may well have been due
to this hydrocephalus. No one is ready to venture a
guess at how much, of course, and we'll just have to
wait and see to be certain. But all the doctors are
convinced that the hydrocephalus was certainly having
a significant effect.

So once again, we wait and pray and hope that...what?
Daniele dreamed last night that Eliza (with curly
pigtails) was Luke's age and walking--and complaining
that her head hurt. Is that a premonition of the near
future? of eternity (not with a hurt head!)? We know
Eliza's healing is certain; we just don't know where
and when. Early on, we shared a verse that the Holy
Spirit had brought to us: "He has no fear of bad news;
his heart is steadfast, trusting in the Lord." We ask
that the Spirit would daily renew our hearts with such
trust. We say, with the prophets, "Who knows what the
Lord may do?"

Love,
dixie jax