Wednesday, September 8, 2010

But she doesn't look sick!

This month will mark a few milestones for Emily. First of all, the child who was not even expected to survive her newborn period will be turning 5 on the 29th. I can't even begin to put into words how special that is. When Emily was a baby and was not doing well, we were not given much hope that she could survive. Okay, that is putting it a little mildly. To rephrase, the doctors had everyone, including me, convinced that Emily's survival was virtually impossible. I mourned the milestones we would never have while praying the doctors could somehow be wrong. After days of that, I even resorted to bargaining with God to let her have just some of those milestones and we would fit all the living we could into whatever time we had. At that point, it became about quality of life more than just quantity. I think we have done a fairly good job with that, encouraging Emily to live life to the fullest and to never be afraid to try new things. And we've been so blessed in that she has done better than anyone ever could have predicted. Her lung disease is now stable, and while she is not exactly normal, she is not going to get worse and is going to grow up and live a full life, just one with obstacles. Obstacles, we can deal with! We feel so blessed!

Other milestones, Emily started a new sport last night...cheerleading! No kidding!!! (See pic above.) Our little wrestling tomboy is now a cheerleader! BUT don't let that fool you, she is still first and foremost one of the boys. I must say that I am so proud of the way she handled herself last night! After practice, we were waiting for Ashton to finish with his football practice, so she went a few feet off to play with some of the other little girls. Definitely the smallest and youngest in the group (other girls were in the 6-8 year old range), she was a follower for a little bit, but then she surprised me. When the group of girls started picking on a little boy because they thought he was wearing a diaper, Emily turned on them and actually pushed the girls off the boy with Ryan and 2 of his friends there to back her up. Not something I expected, but I was pleased to see this side of her emerge. Her explannation was, "I like to cheer with those girls, but they were bad to that boy, and that is not nice. They wanted to pull his pants down in front of everyone, and I was not going to let them do that. They are bad girls!" Could it be? Our little Emmers is well on her way to becoming a good person, taking up for someone else!

Then today Emily returned to her final year of pre-school (pics above). She was so excited! It was a really big day for her, and she met lots of new friends and saw a few old ones too. She got to play in her classroom, go out on the playground, get on the bus and look around, and even have a snack! By snacktime though, I think she was at the end of her rope and really could have used some oxygen at that point, but she suffered through it. About 2 minutes into snacktime, she burst into tears because one of the little boys (now get this) blew on her. That's right, he puffed his cheeks out and blew in her general direction, and Emmers cried about it.

Melting down over nothing...That is a pretty good indication that Emily needed oxygen! She also had those black circles around her eyes and that skin that screamed, "I've had enough." The thing is, we don't have a doctor's order saying she can have oxygen at school. Reason being, Emily doesn't always need oxygen during the day, and the doctor hopes she can get by with just an inhaler at school with the hopes that she will continue to improve. I am really thinking more and more that we should consider having it at school just in case, for times like these (and for times much worse than these when she's surely going to be treated for "asthma"). I am going to discuss it with her pulmonologist at her next appointment, but not really sure how that will go over with anyone.

Emily just looks so good, and I hear over and over from people who don't know and don't understand her lung disease that she doesn't look like there is anything wrong with her. But watching her breathe, I can't even imagine breathing that way for an hour, and she does it all day every single day. Attached video is of Emily just breathing last night. Granted, this is lots better and much much slower than it was in Emily's younger days, but this still isn't the normal way to breathe. This is 22 seconds of video. Look at her neck. How many breaths do you count? If I had to do this for long, I'd be crying for oxygen too! But "she doesn't look sick"??? Maybe not! We work hard at helping her not look sick! That doesn't mean her disease has magically gone away. It is still there, and over the years, we've come to view oxygen as a way to help her not have to breathe like this, as a way to help her feel more comfortable, not as a sign that she is somehow sicker. I just wish the rest of the world could see that too!
video