June 10, 2010

We got both good and bad news this week. I guess we'll start with the bad... the ROP in Benjamin's left eye has worsened this week. The opthamologist decided the best course of action would be the injection since the laser treatment wasn't effective (probably because of the scar he has on his cornea). She did that yesterday afternoon and we'll see if it helped on Monday when he has his next eye exam.

He's lost a good deal of weight over the past 4 to 5 days and is slowly putting it back on. He's currently 4 lbs. 4ozs. He's down to 3 liters on the nasal cannula which is great, but he's using up a lot of his calories to breathe. On Wednesday they started adding calories to his milk and that seems to be helping. He's been tolerating his feeds very well and is up to 10.8 ml/hr. One of his nurses told us that the amount he's getting in proportion to his weight is equivalent to Ryan eating 15 pounds of food a day. Isn't that insane??!!

Now on to the good news! Drumroll please.... because he's tolerating his feeds so well, Benjamin is off the PN and they were planning on stopping the Omegaven today! If he stops spelling (which he's still doing with some frequency), and can put on some weight, he actually may get to go back to South Shore and grow while we wait for the right time for him to have his surgery. No talk yet as far as how long it's going to be before his reconnect surgery, but we're so excited that he's showing such great progress! I almost have to pinch myself to see if I'm dreaming because just a few months ago we were told it could be a year, if not more, before he was off the PN and the Omegaven and look at him now! I can't stop saying how proud I am of my little guy.

He was able to have a couple of reike sessions since we last posted and he finds them very calming. He also had physical therapy for the first time this week and he loved that! We weren't in at the time, but his therapists are going to make sure they show us how to work with him.