Hard to believe my baby girl just turned a year old. My how time goes by fast. As joyous as this month has been, it's also been extremely overwhelming and will continue to be until January is over....
Tomorrow we have to go in for a Swallow Study. She's still having so many problems drinking her bottles. If you look at her feedings on paper, I don't see how she takes anything by mouth so we'll see what the doctors say tomorrow. Her hemangioma on her chin/neck has gotten bigger and changed in color so I'm also worried that it's possibly grown on the inside of her throat as well.
We also have upcoming appointments with her Neurologist and Cardiologist as well as her twelve month check-up. I am terrified that she's going to need heart surgery. Her hands, feet, and legs still turn blue/purple all the time. It's hard to say whether it's cardio related or brain related, but either way, it's scary. I don't know if I could handle her having heart surgery. As if that's not enough, she was sitting on the couch with me the other day and turned purple from head to toe, but never stopped breathing. I've never been so scared in my life! I don't know how I'm going to make it thru these next couple of weeks. Her neurologist is going to redo her MRI and EKG, hopefully those two things can explain some things to me.
I feel like I could just sit around and cry and give up and let her be who she is. But the other half of me is determined to make her better. I've gotten really good at arguing with doctors and fighting for her and advocating for her. People keep telling me that she's fine and she will be a "normal" child some day. Maybe I'm being negative, but I'd rather be in the reality and work on getting her better versus living in a "dream" and hoping for the best.
Oh God, please give me the strength to keep going and to fight for my baby girl. Please look over her and make her well.
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