You just never know how God is going to speak love into your day: for one enthralled 3-year-old, it was a "lights and sirens" midnight ride in an ambulance. The same ride that struck pain through my heart spoke joy to hers.

God is watering my soul in the all-too-rare moments shared between my precious troisième fille - it is but a drop of bitter to the sweetness that these days occur in the confines of hospital walls. All in all, it's been a really great day. Amy is still pretty wobbly on her feet. She is doing a lot of posturing with her legs and feet, which can be a sign of high intracranial pressure (pressure within the skull).

There is no therapy for this bubbly little girl like water. As the shower rains down on her, I watch her soul expanding from a dried husk of the daughter I know and love, expanding, breathing life back into the dear wisp of spice this child normally is.

Her pain dissipates, and we get a glimpse of how much it is hampering her delight in life. If only she could live in the water, she would be a different child these days.

I am thankful that what relieves her most is not drugs or therapy, but some good old-fashioned straight-from-the-ground water, a little warmth, and Mama's touch and attention.

It might just be me...but her eyes seemed a bit better to me this evening. I pray it's a sign of even better days to come!

So far we only have a preliminary report on the MRI: "hopeful" to our rather overly hopeful neurologist, and downright scary to me! Some areas of her brain look "improved" and others look "worse". "Worse" how - that's what I would like to know! No details are available tonight, so I am handing it over to the One who bears my burdens for this night. Neurology won't come around until the afternoon hours tomorrow, at which point the final report should be available. Amelia has an appointment next Tuesday in the dreaded Blood & Marrow Transplant Clinic. Talk about striking fear in my heart. I never thought I'd breath those two phrases in the same sentence - "my daughter has an appointment" and "Blood & Marrow Transplant Clinic". Praying it's just a scare - everyone's overreacting - and I can go back to my cloistered life of relative bliss in the country, never to think in terms of enzyme deficiencies or transplants ever again! I am ready to shake the dust of this place off my feet - and hers - for good.

I don't know about tomorrow;
I just live from day to day.
I don't borrow from its sunshine
For its skies may turn to grey.
I don't worry o'er the future,
For I know what Jesus said.
And today I'll walk beside Him,
For He knows what is ahead.
~ Ira Stanphill, I Know Who Holds the Future

Amy began vomiting, having increased headache, loss of balance, and sleepiness as the day went on yesterday. We went to the Eau Claire ER, where our doctor had paved the way for a quick transfer back to Fairview-University Medical Center in Minneapolis. Amy felt somewhat better by the time we were transported, thanks to some anti-nausea medication that slowed the vomiting. She got her dream ride in an ambulance with lights and sirens on the way to the Cities! I think the ambulance team got a kick out of having someone enjoy the ride for once!

Today Amy is scheduled for a sedated MRI at 3:30 p.m. She is walking a little better this morning, although still listing to the side and tipping if unassisted. She is sitting well, which is better than last time we went through this. Her eyes look pretty good, although the crossed eye has worsened dramatically in the past 24 hours. No eye jerking though, which is good. She is having some temperature regulation difficulties, according to the doctors. I am concerned that the doctors are missing transient fevers, but perhaps they are right. I don't know! Her temp is raning from 96.9 to 99.9, different every time they take it. They are concerned because this can be a sign of worsening brain stem swelling, as the body then can't regulate temperature well. The hope is that the MRI (the less invasive, less risky test) will show something that will point them in a direction for treatment or further testing, so that they can avoid doing the more risky, more invasive spinal tap. After the MRI results are in (probably tomorrow morning), they will decide about other tests. I have requested that they test for Lyme's disease if they do any further lab draws (they still haven't done any, which is kind of driving me crazy!).

So, prayers for today:

• Healing for Amelia
• Wisdom for doctors
• Clear results from the MRI scan
• No problems with sedation
• No abdominal pain/bleeding for myself, as I missed my lab draw yesterday and probably won't get it done today, either; I am definitely not out of the woods on the ectopic pregnancy front yet
  

Mind over matter: I used distraction to help small children deal with pain when I was a nurse, and I employ the same trick frequently with my own kids now. Today the pain is mine, and I picked up my camera for some therapeutic "play" this afternoon. It really took my mind off what's going on, and it was really fun! Here are some photography tricks you might like to experiment with if you've got a camera with a detachable lens:


Playing with a Holga lens, disconnected from the Holga body and held in front of the shutter of my DSLR. This yields some fun light effects. You need a spot meter for these types of photography, as your internal meter won't be reliable. The results are also unpredictable (they also are with a Holga lens, but especially so with one not actually attached to a camera). In order to focus, you have to twist and/or tilt the lens until the part of the photo you want in focus comes clean to your naked eye.


Can't afford a good close-up lens but craving the alien landscapes not visible to your naked eye? My dad taught me this great lens trick that he discovered in the 1970's: disconnect your lens, turn it around, and hold it flush with the camera body. This will give you a fixed focal length of about 1-2" (depending on your lens) and a fixed aperture of about 0.7. You can take some stunning close-ups this way - but beware! The internal mechanisms of your camera are open to the elements so you might want to stay away from water and do this only on a calm, dry day if you're outdoors. Your internal meter won't work for this lens trick either, so you'll have to mess around with shutter speeds until you get what you want. I find that with my camera, I have to go up about 10 clicks on the shutter speed, and the internal meter tells me I've underexposed the photograph.

Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God’s power are being guarded through faith for a salvation ready to be revealed in the last time. In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith — more precious than gold that perisheth though it is tested by fire — may be found to result in praise and glory and honor at the revelation of Jesus Christ. Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, 9obtaining the outcome of your faith, the salvation of your souls. I Peter 1:3-9

Both we and our fathers have sinned; we have committed iniquity; we have done wickedness. Our fathers, when they were in Egypt, did not consider your wondrous works, they did not remember the abundance of your steadfast love, but rebelled by the Sea. Yet he saved them for his name's sake, that he might make known his mighty power. Psalm 106:6-8

My hormone levels dropped again today. I guess that means my "miracle baby" has died already. This is a blessing, and something to be mourned. God is giving me one miracle: a natural miscarriage, lifting from my shoulders the burden to watch over my own health for signs of bleeding and to safeguard the life of my baby from those who would sooner kill it "just to be safe". Yet on the other hand, another miracle was denied: I prayed against statistics and probabilities that this baby, wherever it had landed, would survive against the odds to astound the world. And that doesn't seem to be happening. I received a gut-wrenching phone call from the nurse this afternoon - one of many care providers who have assumed, without asking, that I will be relieved to hear I am not having a child since I so obviously didn't want one when I got my tubes tied last May. "Good news!" she said, elatedly. "Your hormone levels are dropping and we are almost certain now that you have miscarried." Good news?? What do I even reply to such an inaccurate statement?

Amelia had a doctor's appointment today as well...a sobering one. Her regular doctor, who's known her since birth, sees all those deficits that have faded into the background of our new normal with more clarity than I. He recommends a long course of PT/OT and nutritional support to fully rehabilitate all those nerve pathways that have been destroyed through this disease process. He also referred us for the immunology evaluation and a thorough pediatric opthomology evaluation to see if Amy will require an eye patch to improve the coordination of her eye muscles. He thinks the rash...which she sprouted last night...looks consistent with a treated case of rubella (German measles). This could potentially explain her symptoms. Not sure yet, though.


What could heal all these newly opened wounds like the fellowship of our dearest friends? We hosted an impromptu small group meeting tonight, aided by boatloads of left-over Halloween candy, homemade sausage and fettucine, and the burning desire on all parts to simply be together. We listened blissfully to the sounds of our children squealing with delight in each others company, feasted together on a simple and hurried supper, and caught up on the various emotional, spiritual and physical ramifications of the trials we have undergone in the previous month: Heather's cancer surgery, Amelia's illness, my miscarriage, new job tasks for Zach, and all the other minutiae of life. I am reminded, by little Evelyn Fugate's beautiful babyhood, that life goes on. Beautifully so. We are so blessed to be meeting together, in our home, nearly complete, no one gone off to heaven yet (with the exception of that baby within me who has gone so early to the arms of Jesus). He is so gracious to us in the midst of our sin and disbelief.