Cee went to church dressed like a gypsy yesterday. With all the changes she’s having to put up with, I didn’t push it. My sister picked up a bunch of dresses at a garage sale. Most of them are everyday play dresses. Cee chose one to wear for church. It was floor-length, spaghetti strapped, and as […]
On Friday we drove up with the kids to Rochester for Cee’s first followup appointment with our rheumatologist. Cee’s pain level is much lower than it has been, but she still has migrating joint pain. It lasts in a certain joint for 2 days or so before moving to another joint. She does have a rash that […]
Elle had a stomach bug all day today, so I made friends with Mr. Clorox Wipes. It was an interesting switch in the dynamics of the house to have Cee doing okay, but Elle sick. I think it was good for the girls to see that the grass really isn’t greener on the other side. Hopefully the lesson […]
Cee complained that her knees hurt in the bathtub today. I didn’t think anything of it, but later she wouldn’t walk down the stairs. She wanted to be carried. Cee mentioned pain in her knees several other times. This is the first time since we’ve been home from Mayo that she’s had pain in a specific […]
When people ask how Cee is doing, the easiest response is that she has good days and bad days. Really that’s been our go-to answer all along. But the definition of “good days” and “bad days” has changed a lot over the past month. Before diagnosis: A typical good day was when Cee would be able to […]
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, […]
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 […]