This afternoon, we had barely made it to speech therapy in time and Charlie needed her diaper changed. I was in the midst of changing Charlie’s diaper when my cell phone rang. It was Charlie’s pediatrician.
Normally, I let all calls go to voice mail when I’m busy. But, the pediatrician’s call went to voice mail yesterday. I didn’t want to waste more of her time. I answered the phone and awkwardly cradled it between my head and shoulder.
It wasn’t a surprise the pediatrician called. We usually talk after Charlie’s clinic days to discuss how the specialty appointments went. Charlie had a clinic day earlier this week.
“Charlie has been referred to the intensive feeding program” I informed her. We both knew it was only a matter of time before it happened. Charlie’s feeding progress has been a painfully slow roller coaster ride. Some days, I think she has it and am convinced feeding disorders will be a memory. On other days, she will barely consume a thing. Currently, her weight gain is less than satisfactory.
The feeding therapist that evaluated Charlie this clinic visit was the same one who evaluated her a year ago. The feeding therapist noted the progress Charlie has made. However, the therapist stated she felt bad for us because Charlie has been working on feeding for over a year and is still having trouble. She was one of the few recommendations for the intensive feeding program Charlie received on her clinic day.
I explained my relief to the pediatrician. In February, Charlie will have been in feeding therapy for two years. I’m tired of thinking and obsessing over feeding. I’m glad someone else will take the reins.
After my disclosure, the pediatrician spoke. I could hear her flip through Charlie’s chart which more resembles a large tome. As she leafed through the chart, she marveled over how far Charlie has come.
We reminisced over our discussions when we first recognized Charlie had developmental delays and I anxiously wondered if she would walk. We laughed about the morning she found me asleep on the chair beside Charlie’s hospital bed after her readmission as an infant. We looked back at Charlie’s first full assessment by a specialist (which went terribly). Together, we learned the best places to find chewy tubes, music therapy, and AFOs.
Charlie will attend an intensive two week feeding program soon. I’m not bothered about it in the least. Quite simply, we tried our best and she needs more than we can do at home.
Today, Charlie’s pediatrician called. She reminded me that we only lost a battle. Because, my god, Charlie has won the war. She has blown us all away.
Yesterday, Charlie met with her state representatives during our March of Dimes chapter’s Lobby Day.