Monday update

Sunday night was the last day of the "exception" issued by the nurse manager, allowing siblings under age 5 to visit in the room. Amy soaked up love from her sisters and brother. She was notably shaky, confused, and frustrated as she tried to do things or speak clearly after they left. I think the visit was a necessary one, for all of them, but it certainly took a lot out of our sick little girl. She was up until almost midnight, when she was finally able to calm down and fall asleep.

Sunday night, she was awake for about 3 hours between 2 and 5 a.m. Needless to say, both of us were a bit tired today, and slept in off and on until 10 a.m., resting between rounds and nurse visits this morning.

Today has been a bit better for Amelia. She is making fewer speech errors today. She seems more conscious of the errors she is making, which is a good sign. She also seemed to have less tremors than yesterday. Her head tremor remains, and is most noticeable when she is concentrating hard on something. That is the "good" kind of tremor to have, I guess!

Amy's pain was worse again today, this time in her head. She got three bath/showers in the make-shift tub I made her in the shower, padding it with bath blankets and plugging the drain with a washcloth. The shower running on her head seems to offer the best pain relief of our options. She has also complained of leg pain and right shoulder pain today. She is receiving ibuprofen frequently, which masks any fever she might have. I think she may have spiked up a bit today, but she never got above 99.1 according to the measurements obtained.

Her "disconjugate gaze" (crossed eyes) continue to be just as bad. She is also still have some asymmetric expressions, sometimes with one side of her face, sometimes with the other. She does seem a bit more steady on her feet at times. However, this evening, she collapsed twice when I stood her up, as if her legs are weak. That is a new symptom, and worrisome, as previously her legs have been perfectly strong.

Wouldn't it be nice if the message on this pillow Katy brought to Amy were really true? "Just here for the night". Unfortunately, we are here until at least Wednesday. Amy will have a sedated MRI/MRA tomorrow. Right now, there is no plan to place a long-term IV line at the same time. The test is scheduled for 10 a.m., and she will probably go down around 9:30 to prepare.

In other news, I had labs drawn and physical today. I am miraculously and against all odds still pregnant. My lab test shows a growing baby, although not necessarily growing at a healthy rate. This could be one of three things: my hormones don't jump at the same rate as expected, and the baby is healthy and alive in my uterus; the baby is implanted in my tube, and the bleeding and low hormone jump are related to the trauma caused by stretching of the tube; or, I am in the earliest stage of a miscarriage and the lining of the uterus is shedding but the baby is still sending signals to my body. Still praying I'm holding a new little one next June or July!

Blessed is the heart that gets broken but keeps holdin’ on
Holdin’ on for another day
‘Cause that’s what it means to live by faith
So I cry for Your help while the world looks on
And they laugh at my hope when all hope is gone
But I’ll just keep prayin’ when answers won’t come
Am I the fool, am I just a fool
For standing alone while they mock Your name

~Live By Faith, Chris Rice