Im tired. Really tired. Im tired of fighting. Im tired of the insane amount of doctors appts, and then having to come home and cook and clean and then work also. Im tired of not being able to enjoy anything.
Her INR was 2.2 today, which is great cause its where we need it to be. And I know why it was in range, because I havent given her any formula feeds during the day for about a week. Cause I dont want to. Cause I dont want to spend every hour bolusing her 4 ounces. I have too much crap to keep up here in the house. I effing sweep the kitchen floor 4 times a day cause the kids make a mess each time they eat or have a snack. For the past 2 days I have been picking up pom pom strands off the floor in every room of this house. Washing the sheets everyday because of all the diuretics and she pees the bed every night from it. Im just tired.
I feel like maybe some of her doctors dropped the ball on her. Why werent we in feeding therapy a long time ago? Now we have to fight twice as hard cause the damage has already been done in her mind when it comes to food. Cause I had to fight, and yell to get her to eat. But she was so big at birth.....THAT WAS ME! She had nothing to do with being 9lbs 9 ounces. I did that. I ate so she ate. I ate cause thats what they told me to do, Pearl wanted a BIG baby to work on. She has never ate on her own. I still feed a 4 yr old. Yesterday I was at McDonalds with the girls and this mexican lady kept staring at me cause I was feeding Alexandra. I was happy cause whenever I put the food up to her mouth she would take a bite. But this lady annoyed me. No I shouldnt have to feed a 4 yr old. BUT I DO because I dont know what else to do. If I left it up to her, she wouldnt eat.
Today on the way home from the INR check, she says to me Mommy "Im hungry, can we get french fries at Wendys" I said "No, Mommy doesnt have alot of money, and we have plenty of food at home".....you know what she does, she starts to yell at me cause I wont take her to Wendys. If I had the money I would take her to Wendys. But even when I do, she wont eat it. So why waste the money.
Also, her Captopril prescription was written wrong for 3mL twice a day, and it should be 3 times a day. So I called up the nurse for Graziano at CRS, and left a message and set the phone down cause Alexandra was playing in the yogurt I gave her, and I lost it. I yelled, I even sweared. And then I realized that I didnt hang up the phone. Now shell call CPS on me. I just cannot understand why shes yelling at me for food, but when I give it to her, all she does is play. WHY?!?!?!?!
Im just tired. Im tired of being pulled in so many directions, with no end in sight. Her pediatrician even acts like they dont want to take care of her anymore. I have to tell them what to do, and I dont want to. Im just her Mom. I wanna just be her Mom, not the person who has to rehabilitate her from her condition.
I know this feeling will pass, and Ill be back to the normal stuff again. I just was so frustrated and needed to vent.
So all she has ate so far today was some yogurt.....oh well.....