Feeding Frustration

So, we're stuck. We can't get Ellie to take a larger amount of formula at once without her retching a lot. This means we're still on continuous feeds with her pump. She started a new medication on Wednesday to try to control stomach spasms, so hopefully we'll see some results soon. Once she's more comfortable in her tummy, we may be able to get her to a typical feeding pattern and then to try eating by mouth. Fun, fun!

Another Update (even though I keep saying I'm done blogging)

We spent Monday afternoon at our favorite place--Primary's. Ellie passed her swallow study finally. Her swallow is not perfect, but it is safe--no aspiration. Yay! Now we get to deal with oral feeds. Ellie clamps her lips tightly together when I try to put things near her mouth, so I'm not looking forward to this process. I'm supposed to be giving her tastes of her formula on her binky. She can't stand that. I tried a Twizzler last night and that was better. Who knows if she will ever take a bottle, but I might have some success with treats! As for our ENT visit, we found out that Ellie's left vocal cord is still paralyzed. Her right one compensates so her voice is getting louder. I had to take her out of church a couple of weeks ago because she was making so much noise (happy sounds though). At least we are moving forward!

Firsts!

We have finally been able to start doing things as a family! Ellie had her first short hike with us and loved it! We also took the whole crew to This is the Place Heritage Park to see all the baby animals. The park is not far from Primary Children's. When the kids saw the direction we were headed, our oldest asked if we were going to the hospital. She was actually excited about going to "our room" and watching cable TV (we are mean parents and don't have cable)! It is so nice to be all together, but four kids is a lot of work!

So, I can't figure out how to move the pictures where I want them, so you get what you get! Here's another first: Ellie on her tummy (and not crying)! She is 5 1/2 months old and is only now starting to be able to hold her head up. We'll take the progress though! She is also almost up to her goal amount on continuous feeds through her g-tube. Progress with feeding has been amazingly slow. Dumb patience training! She has not been sleeping well. A few days ago, I took Ellie to her pediatrician who told me she has an ear infection (no symptoms, though). I was so excited that she had a "normal" baby problem that can easily be fixed and not a heart problem! She's still up quite a few times at night. Dumb, dumb patience training!  

Here's another first: my "I hate to look nice" daughter with make up on! She participated in a celebration for the LDS temple that was just constructed in our city. The youth in our area performed a dance depicting the early settlers of Utah. It was a fabulous experience for her and very enjoyable to watch for us! Plus, she looked great in her costume and make up!