Catch up...

Hey Bubba,

That's the new name I have taken to calling you lately, you seem to respond to it well and there is a nostalgic quality there for me as well. I used to call your uncle Sebastian that when I was little. Not because that was his name but because I wanted so badly to call him brother and despite my best efforts the word that came out over and over again was "bubba". It stuck with him a while, just like I'm sure it will stick with you a while. It is one of those names that, in the case of children, just says "love" in a way all its own. You're my Bubba, I love you, that's just how it is.

I am certain you have noticed a few things in the last several days. One, we haven't written you any notes lately. Two, the notes you have been getting aren't quite as cheerful as the ones from a few weeks ago. Three, you have been awfully upset lately. Four, mommy and daddy have been too. I'll catch you up with these things one at a time so we can keep them all straight, even though they are all basically the same problems just materializing in different ways.

One. We haven't written you because of some problem we are having with our computer and the internet service at Ronald McDonald. I am pretty sure it was something that I did wrong or updated when I shouldn't have but I cannot figure out what it is and are therefore without internet in the late evenings. Now mommy and I had a plan about that, we were going to make sure and either write your blogs in the morning or in the early evening, right before or after dinner. It sounded like a great idea. It should have worked beautifully. However, you had some other plans for those times of day. Most of the mornings you have made sure to greet mommy with some sort of fit or episode (we are back to the sitcom these days) and therefore tie up most of her morning. Then, somehow, the doctors and nurses and breathing treatments and therapy sessions seem to take up most of the middle of the day. So when either mommy or I settle in on the love seat in your room to write you a little note you decide that it would only be fitting if you both began the day with a fit and then ended it with one as well. And that, my little man, has kept us busy until late each of the last several nights, keeping us from getting anything written before heading to sleep for a few hours at Ronald McDonald.

Two. The notes haven't been nearly as cheerful lately because the steady stream of positive energy and signs of progress has screeched to a halt since last Wednesday. To be completely truthful here I have to tell you that not only are we not making any significant progress these days, most of your doctors seem to agree that you are declining daily. That is a pretty scary thing, I know. Try not to worry too much, the doctors are still doing everything they can to try and get you better even if they don't know what will work at this point. Every one of them that stops in makes sure to tell us that they are still working diligently to figure out what is going on. Even Dr. Nelson with his busy schedule took a good chunk of time out today to sit down with mommy and daddy and discuss what some of the next steps are. Looks like we have some more tests coming soon little man. Hopefully those will bring forth some new answers and some good news and we can get some of these notes back on track.

Three. The last week has seen some of your most epic fits. I feel like you have been battling on and off for the last week, struggling with something that we can't identify and you can't quite seem to beat. You keep waking up, from a complete sleep, gasping for air, fighting for every breath. The first time mommy and I saw this we thought maybe you were just upset and you had to go to the bathroom or something but it quickly became apparent to us that there was something more at work here. It has been taking us a long time to calm you down and you even had to go back on CPAP a few times to help get your lungs working and your airways open. It seems like no matter how much sedation you have on board or how strong the breathing support is you can't seem to fight off whatever this unseen enemy is that keeps attacking your breathing. Today was especially bad, you woke up fighting, after a long night of restlessness and battles, and even though you were sedated and had your CPAP mask on you couldn't quite catch your breath. You turned blue quickly and mommy and the nurses and respiratory therapists had to act fast to get you to come back to them. From what I understand today was the closest call you have had since the first day you showed up here at Children's, and that isn't a good thing at all.

Four. This past week has been very hard on you, but it has been pretty hard on mommy and daddy as well. There are two things that seem to wear on us the most. The first is that we hate to see you in pain and it hurts us every time we do. But the thing that hurts us even more than seeing you in pain is knowing that we are completely helpless to do anything about it. We try to hold you and rock you and calm you down. We try to pat your chest and rub your head and tell you it will be okay. We try to sing to you and talk to you and play with your mobile. But nothing works. Nothing helps. Nothing fixes the problem. Nothing seems to make you feel any better. That is our pain, that is why we are upset. We want nothing more in the world than to make it better yet there is nothing we can do but watch and hope that the doctors and nurses can help you. The other thing we keep facing this week that hurts us is the future. Mommy and I keep hearing things like "tracheotomy" that terrify us. We don't know what the future holds for you and like any parents we want yours to be bright and full of wonderful things, but lately the light has seemed to dim down and the wonderful things have become less possible. This week we have had a hard time feeling helpless when it comes to the moment we are in, and even more helpless when it comes to the days that lie ahead of us, and in particular you.

So I know I didn't give you a ton of detail today but I don't think there is much more to say that will be any more helpful. The next week will bring with it a myriad of tests and procedures, each having the ability to lighten the burden we currently bear, or hand us yet another weight to carry. We will hopefully find answers this week, be they good or bad, that will help us to start moving forward. These tests will shed some light on the path we are headed down, now lets just hope that the light leads us down a happier path than the one we have been on recently.

So sleep now Bubba. Dream of that crazy tiger and his zebra buddy (on your mobile) and the games they play while they dance over your head. Get rested up and get ready for the next round of fights and tests because tomorrow we start again. Know that your mommy and I are so proud of you, and that we are in awe of your strength.

We love you Connor, with all of our hearts.

- Daddy