Sickness #1

December 10, 2005
Emily is getting sick! - We have been battling a horrible cough in our home for a couple of weeks and praying that Emily would not catch it, but it seems as though she has.

What does this mean?
- The cough is pretty rough and seemingly incessant at times. Emily still has the ability to cough, but coughing all the time is exhausting, in case you didn't know. We are going to have to decide whether or not a hospital visit is in our near future. The problem with hospitals and SMA kids is that, as a parent, you are (almost) ALWAYS arguing with the hospital staff. That is how fun it is on top of having to go b/c your child isn't breathing or something horrible in the first place. They'll want to take all sorts of blood samples that they don't really need b/c it is in the standard protocol book on the shelf and we will have to get ugly in order for them to not do all that unnecessary stuff.. it's the one thing that remains constant in all of this.. frustration at the hospital. We do not want to go if we can help it. Our Pediatrician, Dr. Dudas, is great and will do what he can without having us go in.

What's next?
- If we felt that Emily's lungs were collapsing as a result of a secretion build-up or whatever, we would want to have an X-ray taken to be sure, so we would need to take her to the hospital. Also, we have almost everything we need to give her respiratory care, but if we found that we were short some piece of equipment that we wanted to use, we would probably take her in.

Please continue to, or start, praying for us in this.. for strength and clarity of though. There is ALWAYS that chance that Emily will just stop breathing b/c of some airway blockage.. that is the reality of the situation. There are heroic efforts that we can take, but how far can sometimes only be determined at the crux of the event. We have some plans in place, but they are "subject to change."