Fashion plates

I found them at a garage sale...and was transported, instantly, to my friend Erica's yellow farmhouse, the fertile must of the cows, the murmur of machinery, the hot, stifled air of the piano room at the front of the house. I never had this toy, myself. But she did...and I think she was rather confused by my interest in it as the fascination, for her, had long ago worn off. The quick and easy perfection of your creation as you slid the wax stick over the raised fashion plate, the hours you could spend coloring in your own combinations of dresses, pants, tops, hair styles, accessories...I was smitten! It seems funny to me now, looking back at my childhood, which was mostly a story of sports, outdoors, tomboyishness - those fashion plates, and my dozen or so baby dolls, were the feminine moment.

Rosy, of course, loves them. We've had a few half-sunny/half-rainy days since my surgery, and the air is cold and dank. So we are huddled inside, mostly. I am in pain, and curled in bed with books for the most part. The kids all have a head cold, and they've been pretty content with quiet activities. I think we are settling in to the news that summer is going to be different than we had thought. Settling into the goodness of it, and getting a feel for the different sort of work it will be. I can't just be idle...either in my humanness or in my faith. I am just not wired that way. Aaron and I are busy discussing the grand possibilities of the non-cancer life: work? School? Summer vacation? All seem possible again. We step - tentatively now - forward. So many times we have thought the carpet was finally still beneath our feet, only to have it yanked out in a new and unexpected direction.

Days of quietness are unequivocally the gift of God. I praise Him for these past few. I find it interesting that themes of "peace" and "quietness" are often given a feminine slant, like this in Isaiah 32, to the women of Israel:

The fruit of righteousness will be peace; the effect of righteousness will be quietness and confidence forever. [wow - imagine that forever!] My people will live in peaceful dwelling places, in secure homes, in undisturbed places of rest. Though hail flattens the forest and the city is leveled completely, how blessed you will be, sowing your seed by every stream, and letting your cattle and donkeys range free. (verses 17-20)

Our hope is in You, Maker of heaven

Caleb was up for a brief time this morning. Other than that half hour, he has been laying down in bed, mostly sleeping. He continues on the IV fluids and hasn't really taken anything to drink since yesterday in the E.R. His diarrhea doesn't seem to be slowing down much yet, and it is still bloody. We did collect a sample last night and sent it off to Mayo for analysis in their superb lab there. This morning, we saw an infectious disease doctor, who is consulting the CDC and local health department for possible clues as to what this infection could be. All of the physicians continue to suspect E. coli 0-157. If that is the case, antibiotics could cause irreparable damage to Caleb, so as of now, he is not receiving any specific treatment for infection.

He is at Luther Hospital, room 4129. I anticipate he will be here for several days. We have been blessed with lots of Thomas videos, snacks, and toys dropped off by friends. Right now, the girls are home with Grandma Nel and Grandpa Ken, who graciously came just to take care of them. I am still hoping to be able to go to Todd's funeral tomorrow, but it doesn't look like either Aaron or Caleb will be out by then, so we shall see. Continued prayers are the absolute top thing on our list of needs right now!

Aaron is doing slightly better, with improved abdominal pain and slowing of his diarrhea. He is trying some clear liquids, his first sips since Saturday afternoon. If that goes well, he will progress to soft foods tomorrow and perhaps be allowed to go home Thursday or Friday.

Wallpapered in truck stickers from the enamored nurses!

My Bible opened today to Psalm 146: Do not put your trust in princes, in mortal men, who cannot save. When their spirit departs, they return to the ground; on that very day their plans come to nothing. Blessed is he whose help is the God of Jacob, whose hope is in the Lord his God, the Maker of heaven and earth, the sea, and everything in them - the Lord, who remains faithful forever. He upholds the cause of the oppressed, and lifts up those who are bowed down. Although we are thankful for 21st century technology and good doctors, nurses, and hospitals, our hope does not rest with them. We rely on the Lord to sustain us, protect us, and heal us, and direct those who care for us. Praise God that I do not hope in mere men, but in the God who made us all, the God who is not bound by time or circumstances, and can see the beginning and the end of every fearful situation I face.

Back up the hill on this rollercoaster

For this reason the argument which is always forthcoming to silence those who conceive extraordinary hopes of man, namely the appeal to experience, is for ever invalid and vain. A mightier hope abolishes despair. We give up the past to the objector, and yet we hope. He must explain this hope. We grant that human life is mean, but how did we find out that it was mean? What is the ground of this uneasiness of ours; of this old discontent? What is the universal sense of want and ignorance, but the fine innuendo by which the great soul makes it enormous claim? Why do men feel that the natural history of man has never been written, but always he is leaving behind what you have said of him, and it becomes old, and books of metaphysics worthless? The philosophy of six thousand years has not searched the chambers and magazines of the soul. In its experiments there has always remained, in the last analysis, a residuum it could not resolve. Man is a stream whose source is hidden. Always our being is descending into us from we know not whence. The most exact calculator has no prescience that somewhat incalculable may not baulk the very next moment. I am constrained every moment to acknowledge a higher origin for events than the will I call mine. ~ Ralph Waldo Emerson, The Over-Soul, 1841

...your eyes saw Amelia's unformed body.
All the days ordained for Amelia
were written in your book
before one of them came to be.
~ Psalm 119:16 ~

Between 9 and 10 a.m. this morning, Amelia began improving again. Her irritability, leg stiffness, neck and back pain, and light sensitivity began to fade. By about 11 a.m., she was back to roughly the same level she was at yesterday. As you can see from the photos, she enjoyed a short game of Candyland with Uncle Nick and Auntie Sarah. She also ate some lunch, and sat up reading books and playing with toys with various other relatives. Her right eye continues to be crossed almost all the time now, although the eye twitching is improved. This is somewhat concerning because the crossing of the eye indicates the involvement of a different cranial (brain) nerve than the eye twitching did. She continues to be easily overstimulated, more tired than usual, and kind of "shuts down" when anything changes in her physical environment. She did take some steps holding on to our hands today, but is still very uncertain about her balance, tipping backwards and having trouble getting her body to go forward instead of stumbling backward. Her gait seems about the same as it has been since Tuesday, in my motherly opinion.

Her lab work shows an elevated white blood cell count still today, still with the left shift that indicates a bacterial infection. Her spinal fluid has come back negative for a variety of other viral genetic tests, but still shows an active meningitis pattern, according to the neurology team. We had several doctors spend an hour and a half or so in our room, observing Amelia and allowing her time to warm up to them before continuing their assessments. I feel like today is the first time she has given her two main doctors (pediatrics and neurology) a real idea of what she is capable of and where her deficits lie. They both feel that her deterioation throughout the night was due to lying down, which can increase the intracranial pressure. We will try keeping the head of the bed elevated tonight and see if that makes a difference in her nightime status. They are watching her very closely for any signs of worsening intracranial pressure or infection, as they have now stopped her antibiotics and may consider stopping her antiviral as well if it is not making any significant improvement in her lab work or her neurologic deficits.

So, mostly good news for the moment! I apologize for dragging you onto this rollercoaster with us...feel free to get off at any time! We wish we could!

More improvements

Amelia has sat up for quite some time today. She is still arching her back somewhat, and as you can see in this photo, her eyes don't track quite right nor are all of her facial expressions symmetric. However, things seem to be going in the right direction for now. Her antibiotics have been restarted because there is still uncertainty about the source of the infection. Haemophilus B influenza and one other common bacteria latex assays (rapid screening tests) came back negative in her spinal fluid. Her spinal fluid is showing no neutrophils now (markers of bacterial infection); neutrophils were present in her previous spinal tap from Tuesday. However, there are more cells indicating viral infection now than there were then. There is some question whether they have effectively been treating the bacterial infection, and the viral infection is just now becoming more apparent and more aggressive as there is less competition for nutrients. Two of the three teams of doctors feel her improvements are from the lowering of her intracranial pressure (pressure around the brain) due to the drawing off of some excess fluid during the spinal tap. They are hopeful that the antiviral medications will begin to lower the inflammation in her brain by the time the fluid has time to build up again (2-3 days). Unfortunately, that means we won't know for 2-3 days whether her improvements are "actual" improvements, or just related to the spinal tap and therefore temporary. We'll take what we can get! A kid who can smile, talk and sit is a far cry from one in a stupor, lying flat on a bed!

Here's a picture of what motivated Amelia to sit up in bed this morning! She got some much-longed-for visitors for the kids Halloween party on the pediatric unit today. Katy is dressed as Robin Hood, Rosy is Maid Marian, and Caleb is Friar Tuck. As you can see, Amy is a bee - I'm not sure how that fits their theme, but the kids have it worked out somehow! The girls were pretty pleased to see their sister sitting up in bed smiling at them, as you can see by the ecstasy in their faces!

We are so grateful for this reprieve. Please pray that the antiviral medications will kick in quickly and we will see real improvements starting next week. Amelia will begin physical and occupational therapy early next week to start working on her posture, eye movements, and hand-eye coordination. They are also considering speech therapy, as she gets very shaky and frustrated when she can't find the right word, and is still substituting letters and mixing up words in sentences. They are also talking about putting in a PICC line, which they will do today or tomorrow if any of the genetic tests of her spinal fluid come back positive.