Looking forward...

Mister C,

That is the name that Grandpa kept calling you today while he was here visiting. I'm not sure it really fits you but he was pretty adamant about using it and you didn't seem to mind. So maybe that will be another one of your nicknames or an alias you can use when you get to be the bad guy when you play with your friends. It sounds kind of cool, but it also sounds like you really want to be a muscular black man with a mo-hawk and too much gold jewelry. We will kick it around and see where it lands.

So as it turns out today has been a day for all three of us to be looking forward in one way or another. And we have a lot, and very little, to look forward to right now so that is both easy and very difficult. Mommy and daddy have always been people who look forward and use the things we see as a guide and a motivation. We use things like you being born and daddy having so many health issues to guide us back here to Cincinnati. We use things like our vacation to Aruba last year to motivate us to get our butts off the couch. We use things like your breathing tube coming out to use as a stepping stone to something better.

Well right now we don't really have any of those kind of things in front of us, or at least not the kind that we can see right now. We have been trying and trying to get an idea about what the next step will be in your journey here at Children's but much to our dismay we have not been able to get a good answer to that question. The doctors are trying their best to figure out what to do next but it seems like every time they think they have it sorted out there is a little kink that gets thrown into the mix and we start all over again. So the doctors decided it was time to do another test and see if a direction could be determined from the results.

Which is what led us to your little field trip today. That's right, you packed up (its actually a LOT less packing now) and headed downstairs for another short trip to get some pictures taken of your belly again. This time they did what they call an "upper GI". That is when they put a tube down your throat and put some colorful stuff in your belly and intestines to see how things are moving down that way and if you can possibly tolerate any type of normal feeding routine. So they put some stuff called "contrast" in your tummy and let it work its way around a little bit while they used their x-ray machine to take some pictures.

There was good news and bad news and then some other good news. I'll start with some good news. They found that your intestines are not twisted or anything like that and that they appeared to move things along just fine. The bad news is that they found out you have some moderate reflux from your belly that pushes things back up your esophagus and into the back of your throat and your nose. That reflux means that there is no way they are going to let mommy and daddy try to feed you with a bottle, so you will have to be fed through a tube for a while. We don't know how long yet but it will be at least a year or so most likely, depending on how you progress from here on out.

That leads to the other "good" news. And this is daddy doing his best to see the glass as half full today, but the other good news is that we now have a plan as far as your feeding goes. You are going to be headed down to the operating room again next week, this time to meet with some other surgeons who are going to put a "G tube" in your side so that we can feed you without using that little tube going down your mouth anymore. I know that sounds like something cool a rapper would use but unfortunately that isn't the case. This little guy will allow mommy and daddy to put food directly into your belly from a syringe so that you can keep on eating and growing. The surgery will be sometime in the middle of next week, we just don't know when yet.

And sorry that mommy and daddy have been a little bit out of it today. We have been trying to wrap our brains around not just what is going on today but what will be going on in three months or six months or even six years. We both know its impossible to predict the future but we never knew it would be so hard to just try and come up with a plan. We want to ask the doctors all kinds of questions like "when will we go home?", "how long will Connor need a feeding tube?", "how many times a week will he have to come back to the hospital?", "can he still run for president like he was planning to?". I'm pretty sure the only one we can answer now is the last one, and that is a definite "YES" but that is just based on the determination you have already shown us all.

But all the other stuff we don't know about you and where you are headed make it impossible for us to make a plan just yet. That is hard for us but we are doing the best we can to make do with a "day to day" kind of mentality. This is just another one of those lessons you are teaching us from your little bed. I promise we are trying to learn, and quickly, but some things are more difficult than others. So for now mommy and daddy are trying not to think about next year, or next month, or even next week really, we are just looking at right now and at tomorrow. Some say this is a really good way to live life, if so then you are giving us another gift by teaching us that now. So then I guess "thanks" is in order. :)

Now we are winding down for the night. You just had some of your medicine and mommy is rubbing your head and whispering to you while your mobile dances above your head. You seem pretty content but SHHHH don't say anything. We have learned you sleeping at night is like a perfect game in baseball, you DON'T SAY A WORD about it until its over or you will jinx it and ruin everything. So.... lets just say sweet dreams little man, sleep tight and rest peacefully.

Your mommy and daddy love you Connor.

- Daddy