Eliza update 12/11 10am

"But as for me, my prayer is to you, O LORD. At an acceptable time, O God, in the abundance of your steadfast love answer me in your saving faithfulness." Psalm 69:13

Beloved,

We, and so many of you, have prayed for Eliza's Peace and Comfort. It is tempting for us to dictate when the "acceptable time" should be for Eliza to Rest. We do not know whether this is that time. We do know that God answers according to his abundant love and faithfulness. We cling to that. Sometimes just barely. But He is clinging to us and will not let go.

Eliza's condition has not developed to the point where we can draw any definitive conclusions. We all had a sleepless night, except Luke (alleluia). Eliza finally fell asleep at 3:30, with the help of an extra dose of one of her standard sedatives.

Over the course of the night, Eliza's breathing became more difficult, more wheezy (pardon the medical jargon). Her oxygen saturation remained pretty constant in the 70s (normal being near 100), but she did not show signs of this desaturation in the pigmentation of her skin. Her oxygen saturation remains in the 70s this morning, still without much evidence of this to the naked eye. Our precious Eliza has always been full of such tricks.

At this point, we believe that the RSV (respiratory virus) has caused some scattered pneumonia in her lungs. There is no indication that this has become a bacterial pneumonia. The main difference is that Eliza's immune system may be up to the challenge of a virus. It likely would not be able to handle bacteria. And so we wait.

Over the next 12-24 hours, we expect to have a good idea of whether the disease will progress or be defeated. We hope to have prayer time in our living room this evening with as many as desire to join us in calling on the Father, through Jesus His Son, in the power of the Holy Spirit. If you are interested, please check your email later. We will provide details then.

Some of you, I know, have been particularly concerned about Luke throughout our time with Eliza. Yesterday evening, we discussed the situation with Luke. His initial response was to become hyper and fidgety in my lap. He is a five-year old boy and a Jackson, after all. As he began to understand what we were sharing, he declared: "I'm gonna protect her. I won't let her go." Of course, as his and Eliza's parents, we wept tears of joy and sorrow at his words. We celebrated his love for his sister with him. Then we talked about Jesus welcoming the little children to himself, despite the disciples' resistance. He got it immediately. We love Eliza well. He loves her better, and when it is time, she will go to him, into his arms. Love lets go.

Love,
Sam (for the dixiejax)

Eliza update 12/10

Dear family and friends,

Since our last update in July (!), I've many times meant to sit down to write a no-news-is-good-news update. To share pictures from the last few months, to tell you how big Eliza has gotten, to share how Luke likes kindergarten (loves it!), to tell you about the process of finding a home health aide (an as-yet resolved saga!). And each time I've meant to do that, I've been distracted by something else.

This morning, I'm writing a different email. This will be brief, as I need to get to the daily grind in just a few minutes, but I wanted to let you know what has gone on over the last day or so.

Here's what we know and what we don't: Eliza (who has been sick for almost two weeks, though took a turn for the worse over the last several days) has RSV, with some evidence of (what looks like a viral) pneumonia in her lungs. You may or may not have heard of RSV; it's a cold-like virus that goes around every year. In healthy kids and adults, it's no big deal. It usually makes news for its effects on preemies or kids with compromised respiratory function, in whom it can be very serious. Eliza, who has generally healthy lungs but a history of reactive airways (kind of like asthma) and a pretty weak cough in general, falls somewhere in between those two categories.

As of yesterday, Eliza was very sick. Her breathing was very wheezy, her oxygen levels significantly compromised. She was alternating between whimpery and apparently uncomfortable and very, very sleepy. As you probably know, viruses don't have "cures". There is not a treatment, per se, for RSV or a viral pneumonia. There are, however, some symptomatic medications. So yesterday, we began two treatments: albuterol, an inhaled medication (through a nebulizer), which can relax and open the airways; and prednisone, a steroid, which can reduce airway inflammation. Sometime during the early hours this morning, these treatments seem to have provided Eliza some relief. Though she is by no means breathing normally this morning, she is breathing much easier and sleeping. This is a great comfort to us and we imagine to her as well.

Time will tell, likely over the next couple of days, what Eliza's body will do with this infection, and particularly whether the evidence of some pneumonia in her lungs will clear up with the virus or become something more significant. We will certainly keep you posted as things develop. For now, we appreciate your prayers. "But now, Lord, what do I look for? My hope is in you" (Psalm 39:7).

With love and gratitude for all of you,
Daniele (for the dixiejax)

Generations

Eliza and Luke with (from left) Great Uncle Mark, Great Nana, Great Papa, and Great Aunt Barbara. One for the album...

Eliza update 7/22

Dear family and friends,

We've been very busy having a leisurely summer around here! Taking full advantage of Sam's light summer schedule, we have in the last month spent ten days in Syracuse with our extended families and a long weekend in Atlanta with more of my family. For the former, we're grateful to have had a very different experience from last summer's visit, when Eliza ended up in the hospital with an infection at her feeding tube site; this trip, we were able to thoroughly enjoy the company of all our Syracuse family, Luke being especially thrilled to have had lots and lots of cousin-time, of course. And for the latter trip we're especially thankful that Luke (and Eliza) had a chance to spend some quality time with not only a great-aunt and great-uncle, but GREAT-GRANDPARENTS, too! (How many kids can say that?)

When we haven't been travelling, we've kept busy staying cool: Luke and I have spent as much time as possible underwater, as he has become a much more confident swimmer daily, it seems; and Sam and Eliza have taken advantage of the quiet, air conditioned house for reading and/or sleeping (sometimes both at once, in Sam's case!). If he's not underwater, Luke is usually reading, too. There's been plenty of soccer, bike riding, trampolining, baseball, swinging, scootering, etc, etc, etc...not to mention repainting, rearranging furniture...ahhh, summer.

As for Eliza, she's had a relatively long stretch of hard, sleepless nights, at one point going from Tuesday night to Sunday morning without anything more than an occasional catnap. As usual, these difficulties are unexplained, though a recent increase in one of her medications seems to be helping her get back to a more "normal" pattern. As always, these sleep difficulties bring significant frustrations (not to mention exhaustion) for us. I especially find myself struggling regularly to accept my inability to help Eliza in any significant way...but I continue to be grateful for the reminder to depend on God as Eliza so clearly does.

As most of you who know me well certainly know, I'm not usually one to talk of mystical things with much comfort, but recently, for the second time since Eliza was born, I was given a clear vision of God's intimate, personal care for Eliza: in the early morning hours after a particularly long, hard night of futile attempts to help Eliza sleep, I awoke to see what I thought was Sam, standing next to Eliza's crib (which is in our bedroom), stroking her hair, as he so often does when there seems to be nothing else to do to comfort her. As my vision (literal and figurative) cleared, though, I realized it wasn't Sam standing next to the crib, but Jesus. (Interestingly, in my vision, he looked a lot like he does in _The Shack_, a novel by William P. Young, which I had read recently--and if you've read it, you'll know what I mean). That momentary, imaginary glimpse of the very real, very present, very constant care that God provides for Eliza, even when we
can't, was such a gift to me: what is impossible for me is not impossible for God. When I can't stay up all night with her again and again, when I can't make her arms stop flailing so she can sleep, when I can't prevent seizure after seizure from waking her up, when I have to leave her alone in her crib, she's not alone. She's not without comfort or without someone to hover over her and watch her every move, every breath. For that matter, neither is Luke, asleep all alone all the way across the hall in his very big-boy loft bed. Thank God.

"From one man he made every nation of men, that they should inhabit the whole earth; and he determined the times set for them and the exact places where they should live. God did this so that men would seek him and perhaps reach out for him and find him, though he is not far from each one of us. For in him we live and move and have our being." Acts 17:26-28

"Our being": yours, mine, Eliza's.

Love,
Daniele for the dixie jax

P.S. Family photo taken by Sam's brother in Syracuse above. No, Eliza is not sleeping through being dangled over the side of a bridge; she just doesn't like to open her eyes in the sun!

Eliza update 5/20

Dear family and friends,

We know many of you have been eager to hear the result
of our feeding tube switch; I've thought many times
about sitting down to send out an update, but as is
often the case with Eliza, nothing seemed certain for
a good long while, so I thought it better to see how
it all played out first.

We are now breathing a sigh of relief at the end of an
unsuccessful experiment. As you'll recall, about a
month ago we decided to try a new kind of feeding
tube, one that bypasses the stomach completely and
delivers formula directly to the intestine. Bad idea,
as it turns out. Yes, it did stop the vomiting, which
was the goal; no, it did not come anywhere near
slipping out of place, which was the expectation and
fear. It did, however, cause Eliza significant
discomfort (the reason is such a long explanation that
it's not worth going into), so much so that she went
stretches as long as 72 hours without more than a
catnap.

So, after some experimentation, many phone calls with
several doctors, and a few extra trips to the
hospital, we (almost) all agreed that it was time to
go back to the old system, which, though not ideal,
worked well enough. So that's what we did last
Friday: Eliza now has the same old feeding tube she
had, and the same old ain't-broke-so-don't-fix-it
feeding issues (i.e. vomiting frequently). We're also
trying some new feeding strategies to relieve her
significant gas, a problem she's had for a long time
now but which was emphasized by this feeding tube
switch; we've tried basically every medical option, so
now we'll just do the best we can with what we have to
work with.

I confess that this month-long experiment has been an
exasperating experience for me (not to mention, I
expect, for Eliza!). Rather than dwell on the
frustration, though, I've decided to focus on what
we've learned:

1) Eliza does retain minimal consciousness, which we
have suspected but have never been able to prove
concretely. She has clearly demonstrated that she
feels pain and has a predictable response to it
(namely, wild arm flailing). On a practical level,
the question of vegetative state vs. minimal
consciousness isn't all that important, but on an
emotional level, as her parents, it's pretty
significant.

2) In addition, we've been able to sort out the cause
of an odd behavior that we've not otherwise been able
to understand, that is, wild arm flailing = discomfort
from gas. This is a big discovery, as this behavior
has perplexed us, as well as Eliza's doctors, for a
while now. We've had our suspicions that this was
connected to the gas; now we have proof.

3) What I think of as a questionable "mother's
intuition" may sometimes be God's whisper: I had a bad
feeling about this procedure from the start. This
isn't the first time that one of us has had--and
ignored--an inexplicable feeling about something that
has turned out to be right. It's a good reminder to
pray and ask for answers...and then to really listen
for them.

4) We have learned--make that, have been
reminded--what our priorites are in caring for Eliza.
We will do what is right by God and for Eliza, and we
will judge any medical advice we receive against those
infallible measures. One of my hesitations about
doing this procedure was whether we were doing it for
the right reasons. After all, Eliza isn't all that
bothered by the vomiting; we are. As it turns out,
doing what was best for us (stopping the vomiting)
wasn't necessarily what was best for Eliza. Though
the doctor who recommended this procedure sincerely
had our best interests (more sleep) at heart, we
forgot for a moment that we don't decide how to treat
Eliza based on what's best for us.

5) Our beloved pediatrician is a gift. Time and time
again he has walked through Eliza's challenges with
us, Saturday phone calls and mounds of emails and
endless consults with specialists notwithstanding.
Aside from being a really good and really well
connected and really dedicated physician, he serves
the same Great Physician as we do. He understands how
that fact guides our decisions, our plans, our hopes
and dreams for Eliza.

So that's where we are: back where we started a month
ago, grateful for what we've learned, glad this
experiment is over. Somewhere in the midst of all
this, Luke graduated from preschool and informed me
that he didn't want to have summer vacation; he likes
school too much and can't wait for kindergarten.
Sam's just weeks away from summer vacation (and ready
for a little summer break!), and I'm itching to get to
the pool...life with the dixiejax!

We are grateful for each of you and your prayers and
support, this day and always! "This is the day which
the Lord hath made; we will rejoice and be glad in
it." Psalm 118:24

With love,
Daniele for the dixiejax

Eliza update 4/24

Dear family and friends,

Just a quick update: for those of you who don't know,
Eliza had a gastrojejunal (G-J) feeding tube inserted
today. Basically, her feeding tube no longer empties
into her stomach but into the first part of her
intestine. This was not a surgical procedure; the
radiologist simply fed a new, longer tube through the
existing hole in her abdomen into her jejunum
(beginning of intestine) while watching under a
fluoroscope (x-ray).

The theory is that if we don't put formula into
Eliza's stomach, she can't throw it up. Sounds
wonderful, and you may wonder why we've waited two
years to try it. Unfortunately, it's a little more
complicated with Eliza, as always, since tubes like
this in kids like her (whose intestines, you may
recall, were rearranged when she was four weeks old
due to a bowel malrotation) have the tendency to slip
out of place (that is, back up into the stomach) and
need to be reinserted by a radiologist. In fact,
getting the tube in place today proved to be almost
too much for two radiologists--one gave up rather
quickly--as her insides are just so tricky! I confess
that, as I watched, I, too, was about ready for them
to throw in the towel; the procedure seemed very
unpleasant, and Eliza rather uncomfortable. But the
tube is in, and we're hopeful for a significant
improvement in her quality of life, not to mention our
quality of sleep. We'd appreciate your prayers that,
once again, Eliza will defy doctors' predictions by
keeping this tube in place! "The Lord is my strength
and my shield; my heart trusts in Him and I am helped"
Psalm 28:7.

We'll keep you posted!
With love,
dixiejax

Eliza update 4/13/08

Dear family and friends,

This is not so much an update as a chance to share a little photo retrospective: two years ago this past week, Eliza finally came home with our family. Here are two photos, taken exactly two years apart: one on our front porch that first week, and one today, at the WRAL Azalea Gardens in Raleigh. You'll also find these photos alongside some additional recent photos in Eliza's
online photo album, to which there is a link at the end of this message.

Love,
Daniele for the dixiejax

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