Yesterday was a two steps forward, one step back kind of day. She stayed fever free for most of the day, but diaherrea and vomiting became an issue by midday. A Rhuemotology specialist consulted on her case, but nothing appeared clear to him either (other than it did not appear to be auto-immune). In the afternoon they ran a full battery of tests for both common and rare conditions, and we’re waiting on all that to come back this morning. They took her off IV fluids in the morning yesterday to see if it would encourage her to eat and drink on her own, but it was a no-go and she was back on them by 8:30pm. There was concern about her kidneys and bladder, but that scan came out clear. So right now? Watching and waiting. Hopefully the test results will reveal some direction to head.
Those of you who follow me on Instagram and Facebook are already aware, but I realized some friends and family members might like to be kept in the loop here. My sweet baby girl, Elliana, who just turned three, has been sick off and on for the last six weeks. What doctors originally thought may have just been back to back germy kid stuff settled into a cycle of fever that had no other symptoms besides itself. The doctors advised waiting, watching, documenting, and observing her to suss out new details on Feb. 17th. The trend of asymptomatic fevers continued in their usual cycle until this Friday, Feb 28th. Her fever began to go higher than it had before; she stopped eating regularly. By Monday morning, her fever was no longer responding to pain medications that usually brought it down. By mid-afternoon in the Children’s Hospital emergency room she became febrile, running temps up to 104.5 F. Praise be to God, she did not suffer any seizures. At first blush upon her admittance to the hospital, the doctors thought she may be fighting pneumonia.
Today, she continued to run a fever, though gratefully, it did not run near as high today as it did yesterday. As time and tests have gone on, they are no longer comfortable with calling it for a viral or bacterial infection or for pneumonia; they are starting to lean towards something auto-immune- in that the body is attacking itself, not an outside infection. Only time will tell us if that direction is an accurate direction to pursue. We’re not sure how long we’ll be in the hospital right now; as long as she continues to run a fever and not eat they will certainly not release us- once that is resolved, her release will depend on diagnosis and whether or not they feel comfortable sending us home.
She is at one of the best children’s hospitals on the East Coast and has an awesome team of doctors and nurses (whom she is already charming and wrapping them around her finger when she is awake). I feel confident that they will find the source- it’s just a matter of time and the right tests to discover the culprit. Please pray firstly, that she continues in this vein and that her condition does not worsen. She is being hydrated by IV fluids, so dehydration is no longer a concern, but there are a few ‘yellow lights’ they are watching- we really don’t want them to turn urgent and ‘red’. Secondly, please pray for the resources for the care and comfort of my other five children during the day. While my husband and mother have been able to pull a little sick leave from work, neither can continue to take an extended time off, and we cannot have James pull un-paid FMLA leave, because he is the sole breadwinner in our family. I’m confident we’ll find a solution; please bathe the process in prayer. Those are the two major needs and concerns at the moment- I’ll be sure to update here as we know more about her condition. If you want more up-to-the-minute updates, it’s probably best to follow me on Instagram.
My husband and I were talking late into the night Saturday night. He had been cleaning off his desk as he talked, and I had been fiddling at mine. I had a few photographs laid out, thinking of a layout, but was finding it difficult to split my attention between that and what my husband was saying. There were some old library dewey decimal cards laying on my desk and I just started randomly cutting them into strips and squares. The next thing I know, out comes the gesso and a six inch high cardboard initial “M” that had been laying around. (It had been part of my mantel decor previously). Not too much later, and the whole thing was covered in the library cards. I think I’ll paint it with a watercolor wash- maybe green? I found this quote in my piles of scrap paper while looking for something else…”maybe being able to reach out and take it is a gift too.” Amen to that.
Yesterday I found myself feeling pretty fried, creatively. I’ve been working hard on a project that has called in all of my technical skills and my artistic eyes, and before lunch yesterday, everything was blending together, looking flat, and not making a lot of sense. I needed to find my center again.
I’ve learned when I get into this sort of place that walking away is the best thing I can do. Sometimes it’s just taking a few minutes to sip a cup of coffee and look out the window. Sometimes it’s searching out creative inspiration from other artists and makers for a few minutes and refueling the visual tank. Sometimes I find stepping away from what I’m doing and doing something else creatively inclined breaks down the roadblocks that are blocking my way. So it was yesterday.
I received some lovely bouquets from my beloved and children for Valentine’s Day, but after a week they were starting to look a bit bedraggled. I pulled and trimmed and cut- from two large bouquets I created five smaller ones to place around the house. Even the trimmings were pretty eye candy. Stretching myself a different creative direction, using my hands and playing with color in a touchable sense, rebooted my creative brain and I was able to return to what I was working on with renewed focus.
Switching gears this week, I had to put down the cowl for my sweet Lorelei’s scarf. She’s been learning how to knit herself from a kit she received for Christmas, but as I well know, it’s hard when you are first learning. After a tearful episode last week, I realized that she really wanted to wear the scarf before it got to warm, so I’ve helped her along a bit. She knits one row, I knit ten.
Since I’ve gotten back in the writing groove, I’ve found my tastes swinging wildly. Sometimes I just want good clean fun, sometimes I’m reading a book not so much for content but for structure. The books I choose this week were an interesting experiment- I wanted to find books written either about Asian or Middle Eastern culture (or their culture set within Western culture). I didn’t realize in so doing I was also ensuring that each other was also writing in English as a second language. That is truly fascinating to me, particularly in structure and style- the words they chose and why and when. They were all very good books.
The Cry of the Dove was just fascinating. The peek into someone’s life so very different from your own; the ending is truly heartbreaking though. Some might find the prose a little hard to follow but it is worth it to dig through it; the mechanics get a bit flipflopped at times. The Surrendered was just.oh. I don’t even have words. It’s a peek into the Korean war from the other side…I just…oof. So very, very good, and so very, very hard. It’ll live with you for a very long time. Absolutely five stars. It covers ground you don’t want to cover but you really need to. The prose work is masterful- I learned so much as a writer when I could tear myself away from the story. It’s so tightly woven. I’ve just started The Bonesetter’s Daughter. I’ve read Amy Tan before…the way she renders relationships makes you remember your own, even if the story is about a girl, halfway around the world.
Sharing with Ginny.