Sophie is having one of her starvation weeks, she goes through days or even weeks at a time where she is not interested in food or even her primary source of nutrition her pediasure. She refuses to eat or drink, it’s been a part of our lives since she was born. So we don’t really freak out much, I worry but I know she will come around. The problem, she loses weight to fast and she becomes fussy.
Today we had our check up with the ENT who was very pleased with how her ears and nose looked. I verified with him that she does not have laryngomalacia. That’s a good thing! Yayy for good news, Lord knows I needed some. I told him she is aspirating and he thought we should try to thicken fluids for a while before we consider the g-tube. We will weigh our options after we meet with the pulmonologist, GI and the pediatrician.
Anyway, as my child is a control freak and has decided in the last few weeks she does not want any doctor to touch her she threw a fit as the doctor was examining her. I had to hold her down so that he could look at her throat, that was a bad idea. She got mad, she started screaming, biting, slapping, pinching and pulling my hair. I walked to the checkout while I waited to schedule her next appt I tried to keep calm I asked her many times to stop and when she did not I raised my voice and said “Sophie stop, not nice” and gave her a mean look. She immediately put her head down and stopped. Then she looked up at me and smiled, I almost caved and wanted to smile she was soo cute but I held my serious face because I wanted her to know I meant business. A few minutes later after she was buckled in her carseat she started throwing her toys at me while I was driving. I pretended not see her do that. She became angry and started screaming and holding her breath, she is very very dramatic. I just turned up the music and pretended I was not paying attention. I did make an effort to find music she liked but I refused to fuel her fire.She calmed down a few minutes later.
She is really starting to test me, I refuse to treat her differently. She may have Cri du Chat syndrome but she is not a syndrome. She understands me and knows when she has done something naughty. I will not use the syndrome as an excuse to allow bad behavior.
She is very smart and I have started to realize how much control she has over us. Her ST has told us that she has us wrapped around her little finger and she has control and now I see what she means.
She is really at the Testy Two’s not terrible it’s not that bad yet, I’m sure that’s next. I’m looking forward to the terrible two’s. These typical frustrating behaviours for my daughter are wonderful milestones.