Not a lot has been going on with Janessa. She has been doing extremely well with everything! We haven't been to children's since September(Knock on wood) and we haven't had any line troubles! We had a doctor appointment on Thursday, it was her intestinal care appointment. She goes to these appointments monthly, and luckily this time I got to speak with the doctor I prefer to speak with!
We discussed a number of things there. We finally got an increase in her antibiotic(It's a big thing with her so she doesn't get infections). We also are allowed now to feed Janessa fruits & veggies to keep up with different flavors and textures(Yay to that)!!!! But the big thing they are concerned with is that Janessa is NOT gaining any weight, but then again she isn't losing any either. Janessa has been stuck at 11 pounds some odd ounces for the last three months! Which isn't ideal. Janessa we know doesn't move anything from her stomach into her intestine, so when we drain her we see what she eats come back out. So increasing her feeds would be no good. Janessa is also on a high concentration of sugar, so right now she is actually maxed out at 22% sugar(The average is 5 - 12.5%). They can't increase her fats either because she is on a protocol. It seems really weird that she isn't gaining weight, they think all her sugar is just not giving her calories and comes straight out her urine.
There is a few things they are considering. They are considering trying a motility medicine to help move stuff through, they don't know if it's going to work or not, and the other dreaded option is putting her TPN back up to 24 hours a day =(. So hopefully she'll start putting on the pounds!!
Other than that Janessa has been wonderful. She got her pictures taken yesterday and they are beautiful. She also got a new bouncer to play with, and is doing well with it, we got the line to work with it as well(The best we can anyways). We are hoping to stay happy and healthy with Janessa. Thank you all who read her blog!
Marybeth.
