Almost there...

Hey little man,

Well its been a week since our last note, and quite a week it has been. Your mommy and I have been running around like crazy people trying our best to get everything ready for you to come home and stay there. We have had doctors coming to see us, nurses coming to see us, equipment delivered, and people finishing all kinds of education and training. Its been a crazy week for sure.

I know we probably owe you a dozen notes but we are doing the best we can to keep up with everything once a week, and that is when we find the time to squeeze a note in. So lets see what all we have to tell you about this week.... You have had a lot going on, we have had a lot going on, and the rest of the world has managed to keep turning in spite of all that.

So you have managed to get off your methadone, you have gotten off your syldenaphyl(spelling?), and you are getting really really close to getting off your ativan. You only get one dose of that a day now, and the dose you get is so small that the doctors and nurses don't even think it is enough to make a difference in your day. That means, if we are lucky, that you will be off all your sedation medications before you head home. That would be quite a big deal considering you were on enough medicine to put an elephant to sleep at one point. Now we just have to get rid of that ativan and the clonodine patch and you will be sedation free.

Of course who knows if that will be a good thing because you are quite active now and that is with medicine! When you wake up you are either crazy happy or crazy fussy and we can't decide which one until you either smile or put your bottom lip out and make the saddest face I have ever seen. Maybe it will be a nice thing to have you off all the medication, but maybe, just maybe, it will be more difficult if you don't have a little night cap to get you to sleep at night. I'm just saying....

So this week you have spent some time with your mommy, your daddy, your pappaw, your grandma, your Auntie Beth, and lots of nurses and RT's. The one thing I can tell you is that they all agree that you are the most adorable thing they have ever seen. Every one walks in and tells your mommy and I just how cute you are and how amazingly beautiful it is to see your little face smile. Apparently you have the entire world wrapped around your finger. I can't say I'm surprised though, you have been working hard to get that done since you showed up a few months ago.

This week your mommy and daddy have had a lot to do as well. We went to make sure that all of your stuff got delivered to grandma and grandpa's house and then we had to go through hours and hours of training on that equipment. Your grandma and grandpa and uncle Scooter went though all four hours of training with your mommy and daddy so that we would all know how to take care of you and your equipment if something would happen to any of it. The good news is we are all ready to go and everything you need is ready to go at home.

We also had to find ourselves a new home... Last night your mommy and daddy took a big step and moved out of the Ronald McDonald house. That place has been a blessing and we cannot say enough about how great those people have been to let mommy and daddy stay so close to you during all of this. We will never be able to say thank you enough but we tried out best to let them know we really appreciate all the time that they let us stay there. If it weren't for them we would have had to do a lot of driving and we would have gotten a lot less sleep and a lot less training.

But now we are at your grandma and grandpa's house and we are settling into life so that we can get ready for you to come home and settle into life with us. Your mommy and I have been waiting for years on this day and we cannot seem to sit still because we are so excited. Granted things aren't quite like we expected them to be but you know what, we are excited no matter what. We cannot wait to sit on the couch and hold you, to have your friends and our friends come say hello, to have you with us when we do something as silly as eat dinner or watch a movie. This is going to be great.

So for now keep doing what you are doing, keep working hard to get rid of as many medicines as you can and we will keep working to make sure all of your stuff is ready at home. Before you know it we will have you home and we can all kiss the hospital goodbye. No more hospital beds or sterile rooms, no more rounds and no more hospital schedules (except when we have to go back for appointments). For now we can focus on some time at home as a family because it is about time we got some of that.

Know that we love you Connor, know that your mommy and I are so very proud of you.

- Daddy