Learning, again...

Hey there Bubba,

Your mommy and I are going to try and get back into a better routine for writing you notes because we know that you like them and they help us to express what all has been going on with you and in our heads. Oh, and we have to update your "fans" as mommy calls them. There are so many people who tell us all the time that they start every day with you or go to bed with you every night. You are continuing to touch more and more people each and every day. I'm pretty sure you are going to have a VERY long waiting list of people looking forward to their first face to face visit with the amazing Connor. Maybe we should hand out tickets with numbers on them like they do at the deli?

But back to being serious. Your mommy and I have been so proud of you the last few days, even more than before. Like mommy told you last night you are being so strong and facing everything the doctors are throwing at you without so much as a flinch or a quiver. They have backed down on more of your meds, they have put you on a twenty-four hour breathing trial, they have changed your trach for the first time, they have switched your feeding schedule to two hours on and one hour off, and to top it all off they even switched you rooms. There is plenty of space in this new room and what is even better is you are almost neighbors with your fellow fighter Ava. She and her parents are now just a few doors down from us so we can visit with them more often. You're right, it is about time we got that worked out.

I know I merely brushed over it just now, but that trach change is a pretty big deal. Changing that first trach was the big step that the doctors and nurses had been waiting on so that we could start moving you around again. I know you probably don't like being stuck to that bed and trust me we don't like seeing you stuck there either. So with that in mind you got to do some moving and shaking today. Not just the kind that you do when you are mad at us or telling us that you need a new diaper either. Nope, not you, you were sitting up and looking all over and playing with some of your friends.

First your respiratory therapist came in, one of the ones that mommy is a huge fan of, and told us that it was time for us to learn how to take care of your trach. So we got some long q-tips, some water, some peroxide, some new trach ties, and some of that sticky foam stuff that you have stuck to your neck. We laid it all out and got ready and the respiratory therapist walked us through what we had to do step by step. He was very good about telling us the things we needed to be careful about but still letting us learn all the stuff we would need to do. We tried to be as quick as we could and as efficient as we could but we still weren't quite quick enough. After a short while (it was probably a lot longer in your world) you were pretty upset with us and we had to hurry it up. We did get everything done though, after a minute or fifteen. I promise, we will get better.

Then your favorite occupational therapist came in and brought a friend with her, a speech therapist. Now that may sound confusing since you aren't really talking or anything like that but they are the ones who are going to teach you to swallow and possibly eat. No promises though, its not likely that you will be able to eat any time soon but they are sure going to try their best to get you ready to do that when the rest of your body tells you it is time. She watched you suck on your pacifier for a while and when you said you were done with that (apparently you speak a language the therapists here can understand) it was time for your occupational therapy for the day. That included sitting up, rolling over on each side, playing with your hands, moving your head around a little bit, and making all kinds of faces. You were pretty happy about it for a little while, even smiling at the therapists. Unfortunately that didn't last too long and you were ready for some rest. But you did get to move around quite a bit and it was great to see you sitting up and smiling.

Then yet another learning experience for daddy. Your nurse came in and told us it was time to cath you and lately we have had a lot of nurses ask us if we are ready to that on our own. Well we have never been formally shown how to do or even had a nurse ask us if we wanted to learn so today I figured it was about that time. So for the second time in a few short hours I gloved up and helped out with one of your daily procedures. It was more mentally painful for me than it was for you. I know this because I was grimacing the entire time and you slept right through the entire thing. I guess that means I did a pretty good job but I would like to say that it is because you have had some really great nurses who have shown me just how to do it so you won't get upset. Another thing checked off the list to get you home.

And now you are resting after all the excitement this afternoon. You look like you need it because you are zonked right now. You aren't the only one though, your daddy is really worn out too. I have been trying to keep up with everything in the world right now so that we can hopefully somehow get a semi-normal life when we get out of here but it seems like just when I start to think I am making some progress and maybe we can stop worrying about these things that are both frivolous and outright malicious I get an email or a phone call that drags me backward again. I hope that it won't last too long buddy but just know that even though I may be exhausted and stressed it has nothing to do with you and I will always find a way to make time for you.

Keep up the good work little man, keep teaching us new things like you have all along. We are so proud of you and still just amazed at you every day.

We love you Connor.

- Daddy