We had a nice, small Thanksgiving at my house last week. Grandpa came to town on Tuesday and I was able to get out that night to my Supper Club, it was nice to have a night out! We had Thanksgiving dinner on the back patio but it was shady and breezy so it was just a bit cool. Aunt Ginger surprised us with a sweet video reminding us how far Ella has come and that we have so much to be thankful for this year! http://youtu.be/Dbum-pshW3U
Ella is doing well. She is 13lb 10.5oz as of yesterday. We should get a height measurement at the doctor on Wednesday. We are still enjoying the extra time off TPN every day!
We finally got her medicine on Friday of that week (my last post). It took several days for her symptoms to calm but she's doing a lot better now.
We had another eye doctor appointment last week. This time Ella had her first comprehensive eye exam. The great news is that Ella does not need glasses (at this point)!! That was really exciting!
We go back to the GI doctor on Wednesday. I will talk with her about our terrible experience and discuss options for communication as well as a proactive Rx for cycling her antibiotics so we do not run into issues like we experienced again. There was absolutely no need for Ella's symptoms to get so bad before she got relief.
I spoke with the Nutritionist from the infusion company today. She is very impressed with how well Ella is doing. She's now eating 71ml/3h (I held back advancing her last week due to her bacterial overgrowth problems), as of today. I didn't realize this but was told that Ella is now only getting 25% of her calories from the TPN (her fluids), she is getting 75% of her nutrition from her feedings! The Nutritionist said that if this continues she may recommend taking Ella off TPN completely in a few weeks! I was floored at that statement.
I'm trying not to get my hopes up, but it's hard not to daydream what it would be like to be off TPN. Even if she is off TPN, she may still need fluids (hydrating fluids, not TPN) a couple of times a week. They wouldn't remove her central line right away... we have to be sure she's done rather than have to go back into the operating room to replace the line because she was taken off prematurely.
I debated whether I would even share anything about that comment from the Nutritionist, but it's on the top of my mind right now so I'm sharing.
Keep up the good work Ella!!