So expressive!

Hi little buddy,

I don't have much time to write you a note but I wanted to at least say hi and update your fans.  The past several days have been the best you've had in a while.  At first mommy and daddy were worried that you were so sleepy and that your heart rate kept dipping down lower then it has ever been.  You have certainly never set alarms off for your heart rate being too low before.   Turns out that the doctors think you have just been working and fighting so hard to breath this whole time that your heart rate was always elevated.  The sleepy medicines were bringing your heart rate down to an acceptable level but since your trach operation things are different.

You aren't working hard to breath at all and those sleepy medicines have slowed things down a little too much.  Therefore we've started the process of getting rid of those medicines.  You were able to kick the two continuous ones (or drips as they call them) within the first day and a half without much trouble.  Now we're onto working on the other two scheduled medicines.  These will take a little longer but we're going to go slow in hopes of preventing you from having withdrawal like you did last time (that was terrible).  It's amazing to watch you breath without struggling.  Your little chest barely moves when you take a breath and the breaths you take seem much deeper.  You don't look scared and when you get upset you're able to calm down much easier.

The next step is to work on getting off the vent.  You are already flying through the tests they have set up for you and surprising everyone.  The machine is set at the lowest settings and you are breathing over it so you really aren't needing it much at all.  Yesterday you were on a pressure trial for 12 hours, meaning you did all the breathing on your own, and today you have will stay on it all day and night if you can tolerate it (as if there's a question).  Connor, you are amazing.  Every nurse, doctor and respiratory therapist that walks in your room says that you are a new little boy.  I would disagree.  You are still the strong-willed and brave little man you have always been you just don't have to use all of your energy on breathing.

So what are you doing with that extra energy?  Making all kinds of fun faces.   Mommy and daddy don't know what's more exciting; watching you breath without a struggle or looking at your cute little face without any tape or tubes.  A lot of kids with CHARGE syndrome have some palsy on one side of their face.  It seems like you may have this on your left side which is why you can't always close your eye all the way.  We weren't sure how much it affected your mouth since we could never see it all the way.  I can't promise how much it will affect you in the long run but right now you are moving that mouth all over the place and super excited to have your tongue free.  You have very distinct looks and your little eyes can say a million words.  So although I may not be able to hear you cry or make your little noises I think I have a pretty good idea what you are thinking.  Connor your face is so expressive.

Here are a few cute pictures although they aren't the best because mommy has been enjoying watching them more than wasting time taking pictures of them.

"Here's a little smile for you mom"

"Check out my tongue"

"This mobile is amazing"

"Enough with the camera already"

Keep up the awesome job buddy.  You are a special special little miracle and I am so proud to be your mommy.  I can't wait to see all the amazing things you have in store to show us.  Sweet dreams.

Mommy and daddy love you Connor!

-Mommy