Last night was good, you seemed content. You are now getting 11c c every three hours. You did lose more weight but we are hopeful that you will start gaining some soon. Officially you are now at 4lbs 8ounces.
Your blood work came back normal. Looks like you no longer need Calcium.
There was a new test done today looking at your eyes. You have holes in both eyes so we are not sure what that will mean in the future but you are scheduled for another eye exam in three weeks and a hearing test sometime this week.
The syndrome that you may have is diagnosed as Coloboma. That and other things that you have lead us to believe that you have CHARGE Syndrome.
Instead of missing chromosome 22 you may have a mutation of chromosome 8. This explains the partial paralysis in you face and vocal cords, and the heart condition. You are scheduled to have a camera placed down your nose and throat to take a look at what is causing your breathing issues. Hopefully we can get some answerer's and get you home.
I got top hold you last night you were a little fussy but that was because you were hungry. Like clockwork every three hours you were hungry. We did have a Si-Fi marathon. You did not seem too interested so we will try some action movies tonight.
We placed you on your stomach for the first time. You were not sure at first but man did you settle down for a long nap.
You are now down to one IV and the Picc line. We just have to work on the breathing tube and bottle feeding. I have to admit that I obsessed reading about CHARGE on the Internet last night.
Sorry I promise not to obsess tonight.
2 weeks ago