Santa

Rylee has been holding her hands like this alot lately. So cute!
These pretzels are making me thirsty. Still working on the bottle. She doesn't really eat the liquorish or pretzels. We are giving it to help with her oral stimulation.



She likes to blow bubbles when her PMV is on.


Santa Claus came to visit the girls yesterday! I was worried that they would get upset, but they both seemed very interested in him. Jordan hid under the coffee table for a few minutes and then the pictures began. I took Jordan to the doctor on Thursday and her double ear infection is healed up. This doesn't explain why she is waking up every 30 minutes during the night! I am feeling a bit exhausted. We did let her cry it out last night and she would go back to sleep after 10 minutes. It was very hard to not get up and go get her. I think the night nurse had a hard time as well. She wasn't too upset so hopefully this week gets better. We got a new night nurse this past week and so far she is working out great. We actually had coverage last night so I could go out with my best friends. I left daddy at home all day with the girls and everyone is still in one piece. One week until the big first birthday. I am very excited to celebrate the big day next weekend. Rylee has a big week this week. She has a scheduled bronchoscopy on Wednesday afternoon. They will put her under anesthesia and scope her airway. This will tell us which way things are going. We should know if she is going to get her trach removed this summer of if she will require surgery to get it removed. The surgery is a very major surgery so we are praying she doesn't need it. I am very anxious for this bronch. I would be lying if I said that it wasn't stressful. I know that Rylee is here because of the trach and despite of everything, she is very happy. The trach will come out when she is good and ready and we can't stop living because of it. We will update as soon as we get a chance on Wednesday with the outcome of the bronch. I know I don't even have to ask but please keep Rylee in your prayers on Wednesday. We should be able to come home four hours after the procedure, but if it doesn't get started until late we might be staying over night.