The Saddest Room

  Early on in Cee’s illness, I think one of my lowest lows came in what I called “The Saddest Room.” Cee had been taken into an operating room for her bone marrow biopsy.  Only one person could be with her as she went under anesthesia.  The nurse told me to follow her and my mom and David […]

This morning Cee refused to take her medicine.  I ultimately used a trick from a nurse at the hospital, “You can take your medicine yourself, or I will have to do it for you.”  I hate to have it come to that, so hopefully it doesn’t happen often.  At least it worked. Her rash left today, […]

"Mommy, am I going to die?"

  The first time we went to Cee’s primary care doctor for all this, way back in January, Cee said to me, “Mommy, am I going to die?”  Right there in the waiting room, we talked about how everyone will die some day, and how if one stays close to Jesus, it’s actually a happy time.  Cee has always been comforted by […]

Several people have asked how Cee is doing weight-wise, and I’ve honestly told them that I’m not sure.  I haven’t wanted to be disappointed if she’s not making progress even with eating more.  So I haven’t checked until today.  Apparently she’s up to 41 pounds from her 38.  🙂  Guess that means we’ll have a little […]

Cee has been tolerating her Ensure off and on lately.  We try to have it available as much as possible to encourage her to take a sip here and there.  Every calorie and vitamin counts!  Unfortunately, Elle has taken to sneaking sips of Cee’s “chocolate milk.”  It doesn’t matter that we give Elle her own regular chocolate milk.  She […]


For the first time in…weeks? months? Elle convinced Cee to play babies.  As they tucked in their little dollies, there was no mention of doctor appointments, blood work, or medicine.  Just blankets and naps and all those things Cee hasn’t thought about in a long time. And it made me smile. Sure, she only played for a few […]

December Cee

Whenever Cee throws a fit in front of doctors or other people, I’ve been wishing they could meet December Cee —  Cee before she was sick.  December Cee answered questions politely and loved to tell people how butterflies use their proboscis to drain nectar from flowers.  She smiled at strangers and told terrible knock knock jokes.  (Knock, knock.  […]

Part of Cee’s plan includes taking medicine twice a day.  We gave her the first home dose, and she threw it all back up. :S  Not only did we lose the medicine, but we lost the one chicken nugget, two bites of pudding, and glass of apple juice we managed to get into Cee since being home.  […]

A Diagnosis!

  The rheumatologists just left, and they brought us a diagnosis. The MRI looked good–no damage to the bone or cartilage in her ankle.  That means there’s no infection.  According to the rheumatologist, Cee’s official diagnosis is Reactive Arthritis. We had been leaning toward Juvenile Arthritis, but that’s a long-term illness.  The rheumatologist thinks this is […]

…because it made me paranoid. I’ve got enough regular stuff to worry about without being concerned that: -The hospital will have an outbreak of Ebola, and we’ll be put under lockdown. -I’ll go to the bathroom and Cee will go from fine to cardiac arrest. -Cee’s condition will be stable, but during a routine test David […]