pissy mood

Well I created this blog as a platform for me to put out my thoughts, like a therapy. My friends asked me to do it and it has been a lifesaver. I have not always been positive, but getting my feelings out there has always made me feel better, almost lighter. So, I am hoping that happens today. I am in a super pissy, bad mood. And I mean SUPER. Yesterday our day started off just like any other day. Web was getting ready for work, Caroline and I were laying in bed watching Matt Lauer. Web kisses us good bye, wishes his girls a great day and our day has begun. As Web is downstairs eating his yogurt, C is sitting up next to me. She leans forward, falls to the left and lands on her side. This happens a lot. When she is on soft surfaces she can not sit up as well as hard surface. But Web and I are always next to her and we immediately pull her back up, she laughs and we continue playing. Well yesterday not so much, she screamed bloody murder. Her face was as red as a tomato. It was so loud, that Web ran up the stairs and immediately knew something was wrong. We debated back and forth all morning on what we should do. I immediately thought we should go to the ER, that's what Dr. Herndon would say to do. Go to the ER. Web didn't want to go, because she was kicking both her legs. Which she was, however, she was still crying. We finally gave her some Motrin, she calmed down some and Web went to work. Well not 15 minutes later she started crying again. I would say 80% of the day yesterday she cried. The other 20% she was eating or sleeping. Web finally broke down, called Dr. Herndon, and sure enough, we were headed to the ER. Bless Web. He hates taking his daughter there. We both do. But for him, it is even tougher to see his daughter in the ER. For me, it's almost like a relief, because we can at least see what the problem might be on an x-ray.
As always, we have to tell the staff at Children's what to do for her. By this time, we know it's her right femur/hip. No intern, it's not her left, or her arms. Yes intern, we have done this before. Please intern, can you just set us up with radiology. Finally the x-ray tech comes in. No, I am not pregnant. Yes, I will hold her legs. Yes, we have done this before. Yada Yada. I could seriously write a book. I know they are being thorough, but come on already and just take the x-ray. The intern comes in with her boss, and he doesn't see a fracture. But he isn't sure because her x-rays are tough. Did you know she is bowed on her left femur? YES. WE DO. So, radiology is paged, our ortho is paged and we wait. Both dr's come back in and they think, as do the radiologist and our dr's office, that she just injured her already dislocated hip. Whoah. No fracture! No body cast! Hooray! So what can we do for her? NOTHING. Motrin is all. So, you mean to tell me our daughter gets to just be in pain? YES.
Remember, this is our dr's. 1st time to have an OI patient with a dislocated hip. This is new, and he has no idea how to make it better for her. We can't do surgery and pop her hip back in because it would break her femur. It's a vicious cycle, that has no end in sight.
Our Sweet, Sweet Caroline is in pain and there is absolutely nothing we can do about it. It's the hardest thing watching your daughter cry anytime we move her. Bath time, changing her diaper, high chair, playing, laying down, she cries out. I for one, knows how she feels since I have had hip pain before. It's not fair, and it really pisses me off. However, once we get her comfortable, she is ok. It's just getting her to that point. And I hate having to give her Motrin every 6 hours for who knows how long.
So what do we do? We are supposed to leave for NIH tomorrow morning. Well, we go. We would like to apologize now to all the passengers on United flight 7391 tomorrow leaving OKC for Dulles. We will be the parents with the screaming child on the NON STOP 3 hour flight. We are hoping our rehab dr. and our physical therapist can offer us some advice on how to treat her dislocation and maybe, just maybe they know of another case on how to treat her hip and her femurs.
As you can see, I am pissed. I am past pissed. I hate OI. I hate everything about it. I don't think it's fair that she has to go through this at all. Yes, I know there are worst problems out there, and some mothers go through way more than I hope I ever have to go through. But I am allowed to be pissy. I am allowed to be mad. I was thinking this morning, that if OI had a face I would punch it. Well, OI does have a face and it's my daughter. And then that pissed me off even more! It's never ending.
AND on top of all that, we have a teething baby. She has cut her 1st tooth and every day I look at it to see if it has DI. Of course, it's just cut and it's too soon to tell, but let's face it. She'll have it. Then that will piss me off! UGHHHHHHHH!

I hope none of you are on our flight tomorrow! We probably won't be at our best! I was really hoping this post would put me in a better place about all this, but so far not so much. Maybe I should just go outside and scream on the top of my lungs? That would be a sight. I am sure the neighbors would love that!

Love to all