Liliana Sue

Sorry I kept you all in suspense last week. I will try not to do it again. We had a busy week. Liliana has been switched to her ventilator that she will go home on. She needs to be stable on this ventilator before she can come home. She has been having the toughest time getting used to this new machine. While it ultimately does the same thing as the hospital vent, it does it differently and I'm sure it feels very different to her. She had us really worried for her. The new vent was making her work harder to breathe than we had ever seen her do. Her personality that she had gained after her g-tube surgery was lost once again when she was placed on her home vent. She has been a lot more tired and a lot less tolerant of activity and stimulation. Over the last couple of days however, she has been waking up more. Yesterday, I saw my first partial smile since she was placed on the home vent last Wednesday. I hope she is starting to feel better and continues to improve every day just like she always does. LeeAnn and I had our "all night stay" with Liliana last Friday. We made it an all day instead. We were supposed to stay at the hospital all day, do all of Lili's care, and get used to her home equipment so that we would be more prepared to take her home. Liliana was having a bad day after being on her home vent for only 2 days. The stress level was unbearable. We felt so bad for her. We just left her alone and let her rest as much as we could. Any amount of stimulation made things worse for her and us. Even though we were not expecting such a great chllenge that day, I think we handled it very well. Hopefully next time she will be a little more stable. Besides the hospital issues, I had to deal with a crazy week of work, a late comcast guy, missing mail, lack of sleep, and more. I did have a great end to my week. We had our Stride & Ride for the Muscular Dystrophy Association on Sunday. It was a lot of fun and the amount of money that our team raised made me very happy. Our team took first place for the most amount of money collected. They want to interview us on live television...that sounds like a job for LeeAnn. You can read more about this event in my previous post. That is all for now. Here are a couple of new pics for you all:

This is Liliana and her new home vent:












This is her getting some beauty sleep:













This is her wide awake and ready to play: