“I’m glad I have fibular hemimelia because it makes me famous”

Yep! My kid is a rock star. I told him earlier today about the blog updates and the Facebook group and how great it that other kids and families can see how good he’s doing and then not be scared themselves. I could see in his eyes how proud he is and then he said “I’m glad I have fibular hemimelia because it makes me famous”. That’s my boy. The famous Nicholas Curley. Truly though, knowing we have helped other families is beyond heart warming. It adds a dimension of goodness to a situation we would not have chosen.

Mary from physical therapy came earlier to help get him out of bed after the epidural was removed. He did it like a pro. The cast is pretty heavy but other than that I think he felt ok. He decided he would walk from the bed to the wheelchair so he could go to the play room and that’s what he did. Steven is there with him now and I am alone in the room. I even got a 15 minute nap. Nick has not slept since this morning. I think after playing he will be wiped out. We can’t wait for him to be wireless (he still has the catheter and iv). I don’t know how he has not complained about that catheter.

Again I have to say how great everyone at Sinai has been. Nick is doing so well and I think I am just as emotional as I would be if he was not doing well. Seeing him walk made me so teary and seriously he walked in her yesterday so seeing him walk should not be such a big deal!

He will likely be discharged tonight but we wont be going home yet. Rishi and Nick’s nurse encouraged us to stay at Hackerman Patz for the night since we have the room anyway and so Nick can rest more and recover more before the 2 hour car ride. I want to get back home to the other kiddies so badly but I also want to give Nicholas the focus he needs right now. He is also dying to go to HP!!!! Even though he is feeling fine he seems pretty subdued today. He has impressed everyone here already with his easy going way and the fact that he just got up to walk without a fuss at all. He did ask for Steven but he was out filling the pain meds rx! I think he wanted him because he knows he is stronger but Mary from PT did great.

I should go check in and see how he’s doing. When I left the play room he was playing a racing game on the Xbox. When I have more time I will write about the “birthday gifts” all the kids received yesterday. It was the sweetest thing and gave us lots to play with! I am so grateful for that and for the Project Linus. Nick received a blanket and he loves it. He did not even ask us to get his Bakugan blanket from the car. The kindness of people is overwhelming sometimes. There is so much goodness here. The stress of having a child in the hospital is overwhelming sometimes even when things are going great but the kindness can be overwhelming too! Tears are cathartic, right?

Update: Catheter removal caused first tears of this hospital stay. Nick’s pain meds didn’t quite make it to the 4 hour mark but they’re giving him 3ml and I would give him 5ml. As long as he is ok I’m not pushing it. Now Steven wants to go home and Nick wants to go to HP and I am not sure what we are going to do. Nick will have to sit without a booster sideways and I am worried he will not be comfortable. We shall see! Oh and we have to wait for him to pee before they will let him leave. This could be a while.