2 steps forward, 1 step back

Well, just when you think you have made progress, BAM, you go backwards. We finally, after fighting to get Caroline's PAM treatment at the infusion center at Children's Hospital, had our PAM treatment today. I didn't make a big deal about it, because I'm tired of OI. Caroline has been doing so well lately, that I'm afraid I'm going to jinx us. She is running. RUNNING. Needless to say, the less I talk about it, the better I think she will do. Weird? Probably. But I don't want it to define her or us. Today we went to the infusion center, and the infusion nurse got her IV started in 1 stick! Whoah hoah! So flipping excited. That only happens when we are in Omaha. And one of the main reasons we moved her infusions to the infusion center was because we wanted someone with experience. We had heard every excuse in the book on why other nurses could never get a good vein. I think the last one was red heads have such pale skin that it's hard to find a vein. Really? I have no words. So hooray! We went to the infusion center at 8:30 and the IV was in her at 9. All was looking good. Well fortunately, the doctor we are working with at Children's is using Omaha protocol, BUT, will not start the pamidronate until her initial blood work is tested. It took them 3 hours!! ARE YOU KIDDING ME? I'm getting worked up just typing this out. I was livid. After the first 1 1/2 hours, the infusion nurse came to us and told us that we had to draw more blood. WHAT?!?! By this time I am red. I called our wonderful Rose in Omaha and she calmed me down about the blood work. Told me that they could work in parallel and we could start PAM. Well our doctor here wouldn't do it. I immediately called and left a message. I'm talking to the nurse trying to figure out what happened. All while Caroline is playing so well, but I can tell she is so done with the toys. She wants to go home and play with Robert. She doesn't want to be there anymore. Long story short, 12:15 they finally start the PAM. 12:30 Caroline is crying because she wants to be home. Pretty sucky. I have an outline of the blood dilemma and there is quite a few minutes of missing blood. Blood was sent to the lab at 9:10 via the tube, but the lab claims they didn't get it until 9:50? So where was it for 40 minutes? Just floating around the hospital? At 10:25 they called to say they needed more blood, by 10:45 the new blood was sent. 11:35 we were given the ok, PAM arrived and PAM started flowing by 12:15. I mean talk about bad luck. We finally get the infusion center and an infusion nurse, but we get horrible, ineffecient lab processes. I made sure to voice my opinions. I was so mad, I was crying. And yes, I dropped the F bomb. I mean come on, a 2 1/2 year old with an IV in her arm for 3 hours with NOTHING flowing. UNACCEPTABLE. I plan on writing a letter to the hospital, but after typing this post, I know I need to calm down a little more!! Caroline is doing great and the PAM definitely worked! I asked her how she felt on the car ride home and she she told me her back didn't hurt her anymore. Which breaks my heart that it even hurts in the first place, but so thankful that the medicine works. And after seeing how well she is doing tonight, the wait was worth it. Robert is doing 100% awesome. He is so close to walking independently. It makes me so happy, but so sad at the same time. He is getting so big! He's not even a baby anymore. He sure doesn't have baby weight! He is all boy! He talks non-stop too. Funny, because he will hear Caroline talk and he tries to out talk her. And he chases her down the hall. He absolutely loves his sister. We are so excited for his 1st birthday next month! And of course, I am super excited to plan the party! This weekend we are going to be in Washington DC for an OI Conference. We are excited to meet more families and children with OI. And we get to actually put faces with stories. It will be so nice to be with other mothers that know what I go through every day. I love my friends, they are definitely the best, but they just don't know what I go through, think about, day in and day out. So it will be so nice to talk to moms that can relate.

So that's us in a nutshell. A 3 hour infusion took 7 1/2 hours. Robert is minutes from walking. And the whole family is off to our nations capital. NEVER A DULL MOMENT! Love to all