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Wednesday, August 11, 2010

There's no place like HOME!

We were discharged from Cardinal Glennon exactly a week ago. Lila has had some good days and bad. She seems to be tolerating the NG (nose feeding tube) fairly well. She LOVES to pull it out! She can be such a little stinker sometimes lol but she has been smiling more. We had a follow up with our pediatrician today to check our weight. Lila weighs 11 lbs 14 oz. She has gained a little more than 2 ounces since coming home. The doctor said that is just a little less than normal but that she should start picking up soon. She still won't eat much by mouth. I have to fight her to get anything in her little tummy. We feed Lila every 3 hours. The doctors told us to try to feed her by bottle for 30 min and after that whatever is left to put down her tube. Sometimes she eats all of the 100 cc (which is a little over 3 oz.) and sometimes we fight to get 5 cc in her by mouth. The doctors still don't know why she won't eat, although they say it is probably a neurological disorder.
Lila is laughing more and loves it when people sneeze! She thinks its the greatest thing ever. Within the past few weeks she has really turned into a mama's girl! She won't let me go anywhere or leave her with anyone other than Daniel. I don't mind though : ) we have a home nurse coming twice a week to check on us and see how the feeds are going. Daniel and I REALLY don't like her but we put up with her lol. Lila still has therapy twice a week. OT (occupational therapy) comes every Wednesday for 60 min. And DT (developmental therapy) comes every Thursday for 60 min.
Well Lila just woke up from her nap. Will blog more later!

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