So I have to start off by telling you that you managed to impress one of your doctors today. Normally during rounds you choose to throw some sort of fit and make enough noise with your alarms and your coughing to keep mommy from talking to the doctors much but today it was a different story. Today you slept right through most of the morning, including rounds. That didn't stop you from butting in however, you had to make sure you were heard. So, since you weren't awake to get your normal intra-rounds attention you did the only thing you could do to get a rise out of the staff as they tried in vain to give report on you, you farted. Not just once, oh no, and not quietly either. You blasted your diaper like you were trying to propel yourself out of your bed. At that point Dr. Marino had to stop rounds and make sure that every knew that you were officially a "little MAN". He is somewhat of a stoic character so managing to get such an animated reaction out of him was quite an accomplishment of yours. Hopefully going forward it won't take extremely audible bodily functions to animate a crowd but if that is what it takes there have been plenty of people in Hollywood who have made a decent living that way.
Now that the joke is over for a bit lets jump back a week and pick up where we left off in mommy's last note. A lot has been going on since then so there is plenty to catch you up on. First of all we had a meeting with a bunch of people who care a lot about you on Friday and they started helping mommy and daddy put together a plan to take better care of you. It isn't that we weren't taking great care of you before but now that you are getting older there are some things that we need to start doing to help you make progress on a daily basis and get ready for the real world when that time comes. One big thing is getting a few lists together: things you like and you don't like, things that make you mad and happy, things that you are working on right now, things that you can already do, and the people who you know and know you best. Those lists are going to be close to you from now on so that people will be able to help you out when you get a little bit upset.
Another big thing we learned that we should be doing for you is creating a schedule. It sounds weird to say that since pretty much every part of your life since the day you were born has been on some sort of schedule (hourly check-ups, scheduled medicines, daily x-rays, weekly bloodwork, etc.). The thing that the doctors, and even mommy and daddy this time, tend to forget though, is that you are getting older and you are going to start doing older kid things like sleeping through the night and taking regular naps. Well that won't work if we don't have you on a schedule, how would you know if it is day or night or when nap time should be? So we are trying (and buddy I am EMPHASIZING the word trying here) to build a schedule around your internal clock. One that won't change your current schedule too much but will get you used to being awake at certain times and getting your bath at certain times and even taking naps at certain times. You haven't made this easy so far but we will keep working on it because it seems to help when we can make it work.
Other than that Friday was a pretty quiet day. Saturday was too believe it or not. There was only a little bit of excitement when your nurse, one of your favorites these days I think, called mommy while she and daddy were in the cafeteria so daddy could eat lunch and toldl her that you had a big surprise for her. Now I know we have told you that every time we get a call with a Children's Hospital extension on it we freak out but this time it was apparently some good news and we needed to come see something. We were a little bit apprehensive when we walked into your room but you will never believe what we saw...
Your Pappaw came up to see you. He hasn't been here in a few weeks because the weather has been pretty bad but he came up and spent a good chunk of the day with the three of us and even got to hold you and play with you for a little while. He was so impressed with how big you have gotten and how good you looked and I think he enjoyed playing with you more than anything else.
After that uncle Scooter and auntie Beth came by for a little while and brought mommy some lunch. As usual you seemed completely enamored with auntie Beth. I think perhaps we should get a cardboard cutout of her with a recording of her voice for times when you seem inconsolable because it doesn't seem to matter much what kind of mood you are in when she shows up because you chill out for her. Now after that you were getting pretty worn out so we did some trach care and got you ready for a nap. You were certainly agreeable to that after your trach care and a little bit of your favorite sleep medicine.
After that mommy and daddy went to do our weekend errands and left you to sleep the night away, which apparently you did. You slept all night and were so good for your nurse that she made sure to tell us about it several times. Then, bright and very early, Sunday morning you awoke to Grandpa in your room all geared up to spend some time with you. Apparently the two of you had quite a time. You spent three hours in his lap and the only time the nurse had to come in was when she heard "noises she had never heard before" coming from your room. She was worried maybe something was wrong but as it turned out it was just Grandpa making faces at you and doing his best pirate imitation to keep you entertained. Now Grandpa couldn't stay all day because he had some things to attend to that afternoon but your Grandma came down and relieved him so your mommy and I could try to get a few things done. She spent most of the afternoon with you and the two of you had quite a fun time as well. She didn't make any crazy noises to scare the nurses but it sounds like you were entertained none the less.
By the time mommy and I got back to see you Sunday afternoon you were already zonked out and ready for bed. We wanted to see you but since you had been up so much that day and were so tired we decided it would be best to let you sleep. And sleep you did, again. All night long you slept quietly and you had the same nurse as the night before so she was quite impressed. I don't know if that is going to be your new thing or if maybe she had some sort of magic touch that kept you happy but there is an old saying about a gift horse's mouth that I try to remember at times like these.
All of that sleep was a good thing though, because you had to get up early on Monday for a big day. You were due for your g-tube to be changed to a g/j-tube instead. Now the doctors had told mommy and daddy that you were going to be headed down for your procedure sometime Monday afternoon but while daddy was driving to do some work at seven in the morning one of the doctors called to say you were going down in thirty minutes and they needed consent. I was a bit flustered but agreed and let mommy know it was go time. Like the true trooper that she is your mommy rushed around and ran over to the hospital right away so she would be here when you went down to surgery. Afterwards she talked to the doctors and they said that things went well. Your stomach and the placement of the tube wasn't ideal but as usual you were a champion and breezed right though the procedure. You didn't even get any dopey medicine, all you needed was a little Tylenol. Now that's tough if you ask me.
You had a good rest of the day that day and cuddled with mommy and daddy quite a bit as the day went on.
Yesterday was a big day too, but more because mommy and daddy had to get a lot of things done. To quickly recap I'll tell you this... A couple weeks ago a fire truck decided to ignore a red light and took out daddy's car and after three weeks of looking we finally found one and I think this one will fit you even better than the last one. Also, there has been some pretty ugly stuff going on for your daddy and it is finally OVER. Yesterday I had to sign some paperwork and send some emails while we were out but that weight is off our shoulders at last. Mommy and I also found you a great new seat and a new toy with an awesome mirror on it while we were out trying to find some of the necessities for your trip down to the transitional unit (whenever that may happen). We have to get you a stroller and a car seat and a few other essentials so we are trying to get that all wrapped up.
It is only Wednesday but its been a long week for us already. Now you couldn't tell that by looking at you today....
Keep on trucking buddy, keep on trucking. Your mommy and your daddy are ever so proud of you.
We love you Connor.
- Daddy
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