Expecting the worst

I don't know why somedays I am okay and others I am an emotional basket case. Maybe it is just exhaustion from stress, or the fact that Addison still doesn't sleep. We went to the radiothon this morning for the Children's hospital and it just reopened all those feelings of helplessness. As soon as we pulled into the parking garage Addison started saying she didn't want to go to the hospital, the IV is burning, the tube in her nose, etc. We just kept reassuring her we were going to play. She was clinging to us the whole time. Our interview was at 10, which was the DJs shift change so there was confusion and the new DJ called her Maddison and thought we were in the hosptial for a fever. I didn't get to tell Addison's story the way I had reherssed and to tell you the truth I don't even remember what I said. I have been feeling anger these last few days. I just don't understand why she is still sick after everything she has been through. Everyone I have spoke with, on facebook and the March of Dimes website, whose children had the same birth defect are all fine after their first surgery. I am still furious her pediatricians were not listening to me and even that she was discharged from the NICU without a GI referral. People make comments to me about how strong I am and they can't imagine what I am going through. Which really you can't! I don't consider myself strong. She is my daughter and I am just simply doing what any other mother would do in my situation. As I have said before, me and Tre' don't know what it is like to have a healthy child. I heard some other children's stories today and I was sad for them. Some parents were telling stories of their children passing away and I was grateful to still have Addison in our lives. And then part of me was jealous that their child was born healthy so at least they were not suffering their whole life like Addison has been. I know that sounds horrible, I am just having a bad week. I am exhausted from dealing with the t shirts. It is so much work keeping everything organized on top of taking care of Addison, her doctor appointments and working full time. I am so thankful to have sold so many shirts and it feels great to be able to send checks to her doctors. Sorting the shirts, contacting people to deliver them, delivering them, shipping them, etc. it really is a lot of work. I also ordered 5000 raffle tickets that had to be stapled together and I have to keep those organized too. Who took which ticket numbers, etc. I guess I am just down in the dumps this week. I feel like the bills are never going to stop so what is the point of doing all this fundraising? Part of me wants to delete some of the things I have said but this is our reality and if I am going to keep blogging I might as well be honest about it. I know people have it much worse than Addison does and I am so very thankful Addison can at least communicate with us.
 I am just dreading her upper GI series test on Monday morning. Her GI wanted it done this week but she can't eat or drink after midnight the night before and all the imaging center had was a 10 appointment and I am not making her wait that long since the test can take over 2 hours. I know she will be scared and she is not going to want to drink the nasty stuff. Just like going to the hospital today, this test is going to bring back all those memories for her as well as for me. She vomited during her last swallow test so I am worried about that too. She wasn't able to lie flat during the last test either. It feels like I am so used to getting bad news I just expect something to be wrong. Like when we checked into the hospital and had that swallow test it didn't show anything to be wrong and as soon as the surgeon cut her he said it was a very obvious stricture so what is the point of this swallow test? We know she never had a problem with liquid moving through her stomach. Maybe I should have just took the 10 appointment so I don't have to stress about it all weekend long.
We were also asked today by the children's hospital to be filmed in the boat they are giving away in thier Dreams Come True Children's Miracle Network fishing tournament. I told him we would do it but now I am having second thoughts about it because we are so busy. Tre' can't take off from work so it will be all on me. We would just be filmed taking the boat out and letting Addison hold a fishing pole, etc. It is for thier commercials. It takes up practically our whole day for an appointment. We have to get ready, leave an hour early to drive to Baton Rouge, then wait, then drive back home. Addison is usually so wore out she will sleep on the way home and that ruins our schedule for the rest of the day. I know with her having that test Monday that will make me have to stay up and work that night so doing it over again on Tuesday, I will be exhausted. But then I want her to be on tv! Now that she is getting all this press maybe I should add her autograph to the raffle!
She hasn't vomited since last Friday so I am just expecting it any day now. Her belly was poking out pretty good tonight so it looks as if it is time. She keeps telling us she is going to puke and I tell her no, keep it in. Sometimes when she says that she just ends up with the hiccups but I can always see her trying to keep it all down. It is hard to describe but she moves her mouth a lot. When she was a baby her doctor called it silent reflux. I have to get back to work so, as always thank you for your continued support and prayers.