Up and Down

Oliver had a really great weekend and we were able to get the feeding rate up to 20 mls/hr. He slept a lot but was very comfortable and just seemed to need the sleep. Over the weekend Oli got his make a wish granted. They heard of Oli's condition and we told them how much he was listening to music right now so they brought Oliver a new Bose stereo and an Ipod touch! It was the perfect wish and Oli has been listening non-stop to his music without the CD player pooping out. He also had a big boy hair cut that looks so sweet and we had our family pictures done. People are good.
Yesterday Oliver sounded like his lungs were gunky so I decided it was a good time to start his vest treatments again. He has not had it since his port was placed and it was a BAD BAD decision on my part. I will be beating myself up for a while on that one. Oli went from really happy to feeling a lot of pain soon after the vest. We have been struggling all day to get on top of his pain and we had to go down on feeds again. Last week we were hoping he would stop pooping, today we were trying to get him to poop because it had been so many days. It is a constant up and down of figuring out what to do. I started cheering today when Oli pooped and Adina said, "Yay!! Mommy now maybe Oli will not die?" We just keep telling her we are doing everything possible to get Oli in feeling better. We are tired. We go from thinking we only have a little time left with Oli to thinking maybe he is getting a little better. This could go on for a long time so we are doing our best to make life "normal" for the girls.
Oliver is strong. I look at him when he is in pain with a silent tear dripping down from his eye. Not being able to fix the pain makes me break inside and all I can do is wipe the tear away. Oliver has taught us and so many other people so many things. The people that look at Oliver and only see tubes and feel pity are missing all of the beautiful little secrets Oli shares if you just sit with him and listen. In the last few years we have gotten ideas and suggestions how to make Oli better from people who we know mean well. How important it is that kids crawl and how important it is that we don't give up. These people are all missing the point. We have never given up on Oli and we love him for everything he has accomplished that those people can't see. We just ask that people continue to see Oliver for the strong little stud muffin that he is.
I try to update more but some days are too hard to write and other days are going so well I am afraid to say it out loud. We still do not know what is in store for Oliver and we are praying every minute that we can have a lot more time! Thanks again for everything.