Out of the ICU

Juliana moved to a semi private room this weekend and is looking fabulous. She is able to actually leave her room now (supervised of course). She can come out to the play room and also will be able to go for walks throughout the hospital. This great because her big brother Omar loves to spend time in the playroom. Omar has been a great big brother to Juliana. He is so gentle with her and loves that he gets to hang out with her and give her hugs and kisses. It was much easier visiting her now that Omar can play and visit at the same time.

On Friday Juliana had a hearing test done. She passed on her left but was referred for more testing on her right. Just like her eyes we will just have to keep a watch on it and follow up with another check up. She has been receiving a daily diuretic for months and this can also have an affect on the hearing. Her eyes seem to be okay for now. She is showing neither growth nor improvement, so the opthamologist will just continue to check her eyes weekly. Fortunately she is weaning off the diuretic and has gone from 2mg per kilo to 1/2mg per kilo over the last month.

She is now getting 7cc per hour of Neocate and is handling it pretty well. We did make a big jump today from 6cc to 7cc and I am crossing my fingers that she will tolerate this change. It still looks like it will be a few weeks till the surgeon is ready to do her surgery. So we will probably be spending Christmas in Boston. I would much rather her home but I am more than happy with the progress she has made so far.