ZZZZ....

Hey there Sleepy Head,

I'm guessing after last night's note you have a pretty good idea what the doctors wanted you to do all of last night and all of today. Yep, that's right, they wanted you to sleep. So after your fits last night Dr. Ilias got you all fixed up with plenty of medicine and plenty of breathing support so you could get some much needed rest. Your lungs have been doing well today, your secretions have been less than usual, and your heart rate has been doing pretty well too. But of course all of those good numbers and good signs come with a cost, and today that cost has been extra doses of your sleepy medicine. Lots of extra doses.

I think because you are keeping this respiratory issue of yours a secret for now the doctors have made the decision that it would be better for you to be sleeping and resting than awake and potentially throwing a fit. Every time you get upset lately your color gets bad, your lungs start to work too hard, and your heart rate jumps and won't come back down. Mommy and I had gotten to the point of not freaking out every time you had a little fit but the events of the last few days have brought us right back to where we were two months ago. We see you start to get a little fidgety or upset and we rush over to your bed and do everything we can to calm you down before you start to work too hard.

Even though mommy and I are doing our best to help keep you calm (mommy has been doing way more work at this than I have, you have put her through a pretty rough week little man) we can't seem to be here all the time and stop all the fits. So because of that the doctors just keep upping your medicine more and more in the hopes that you will eventually just level out and rest. If we get to that point (maybe we are close today?) then we can start weaning back off of your medicines and your breathing support again and see if we can figure out what is going on and why we can't seem to get over this hurdle. That is the plan for now anyway.

This week should be an interesting week for you. Dr. Morales really wants you to have some fancy scan done this week that will watch you breathe and hopefully see something we can point to and fix. Your ENT friends want you to have another MRI, this time to take a good look at your ears and see if they can determine what all is going on with them and how they can help. You are supposed to have a follow up audiology test but I think maybe that one has been pushed back. And then, of course, we are going to start weaning you off your breathing support and your medicines again. Oh, and we can't forget your milkshakes. They will make a comeback too I'm sure.

Maybe that doesn't sound like a lot compared to some of your weeks since you have been here, but as you know these weeks where we try to wean you off of things are never easy. And one test always leads to another test. So for now how about you just keep on keeping on and sleep your little day away. You deserve it, and odds are you are going to need it. But know that mommy and I are here, and we love you, and we are SO proud of you and your strength. You continue to inspire and amaze us every day.

We love you Connor,

- Daddy