I hate these appointments because I fear the discovery that something may be wrong. That's why she has these appointments. Because something could be wrong.
As we approach Anna's 5th birthday, our frustrations continue to grow over the bowel management program (or lack of) that isn't quite working. We still have days where we blow through 10-12 pull-ups. We still have to buy wipes. There's an emotional impact. There's an added expense that thankfully we don't have to be concerned with given that Rich and I are both bringing in income. (Our insurance does not cover this.) I mention this because some may not realize that this is our normal.
While running errands a few weekends ago, we cathed Anna in the van. We do this quite often. If we are out and about, it's really the only comfortable and private place for us to do so. I wonder how much longer we can do this. Is Anna going to protest? Will there just not be enough room? At some point, Anna will be cathing herself. I can't help but feel that a responsibility this great should not fall on a child.
Today was the first day in a long time where all signs of sickness have left our home. Anna's stomach was much better yesterday but she was still acting very irritable. We were concerned that it was related to her shunt and that she wasn't telling us that her head hurt because she knew that by telling us, she would have to go to the hospital. Thankfully today, that worry is gone.
I took this a few nights ago. Anna had her legs curled up even further but had moved by the time I returned with the camera. (Most nights, she refuses to sleep with any blankets. I think she gets heated up. Medicine side effect or genetics, perhaps.)
I can still see that tiny baby in the NICU. That baby who was strong enough to endure three surgeries her first few weeks of life. She was in an open air crib for much of her NICU stay. I remember one of her nurses telling us how she would bring Anna around at night to visit with the other nurses and babies. I always smile when I think of that conversation.