Whats going on since my last caringbridge post

 Lyla has been doing awesome!!! She went home on the 28th and its been great.  Just one concern, she has swollen lymph nodes. The GI, Surgeon, Pedi think they are just from all her surgeries. We are watching them and the Pedi will check them out again Jan. 10th when Lyla gets her 9 month old shots. She has a couple behind both ears, under her armpits, on her side and a couple on her chest.

Other than that everything is awesome.  While in the hospital she got up to 22ml/hr which was the max amount of food to get off TPN. We tried to go TPN and Lipid free for 24 hours, but Lyla's body wasn't ready. She got dehydrated and started dumping.  Now she gets TPN and Lipids for only 12 hours a day., that is better than 18 hours like before, so we will take it. We went back down to 15ml/hr and are going to stay there for a while. She also gets 15ml bottle twice a day. And we started the Imodium again, she gets 1 1/2 teaspoon every 6 hours. and instead of pectin in her formula she is getting benefiber mixed in her formula to help thicken her stool and help her absorb. & She can wave now :)

 

We had a great Thanksgiving, lots of visitors and food. & We were told Cook Children's is sponsoring our family for Christmas. We go Wednesday  to pick up all our gifts. We sat up our Christmas tree yesterday  and Lyla helped put the bow on top. She thought it tasted good!

I believe she will get a tooth soon, lots of drooling, chewing on everything, and sometimes just wants to chew on her bottle instead of eat it. She is getting bigger too, weighs 12lbs 7oz now.