Home again...

We got home from Detroit this week. Thanks to everyone for your thoughts and good wishes. G appears to be slowly recovering. Nothing any of the dr's gave her really seemed to have any sort of immediate effect. Nothing to make us (or the dr's) say "XXX is the best treatment for her". It appears to us that despite all the medications and treatments, that we were supporting her at best and giving her body a chance to recover on it's own. Which can be difficult when your immune system has been wiped out by powerful steriods.

Don't get me wrong, steriods have their place for serious illness. She was first given steriods in Arizona last Feb when she had a very scary allergic reaction to Amoxicillin that she was on to treat a sinus infection. At the ER, they gave her vast amounts of benedryl and steriods. She was on steriods for a week after the ER visit. And guess what? Her coughing vanished. She could breathe. To Wood and I, it appeared to be a miracle. She had been coughing nonstop at that point for about 3 months. It was getting worse and we were at our wits end. It made us realize that she was being undertreated for her asthma and other pulminary issues.

Seeing the remarkable effect they once had on her, I know why the drs want to turn to them again. But they don't have the same effect on her. They have serious and significant side effects, including wiping out her immune system - right at the beginning of cold and flu season. They give her wild mood swings. They make her crazy. And they aren't working.

I really need a diagnosis. She apparently has features and characteristics of several different issues. Because she has seen multiple drs, we get the impression that each (except for the specialist in Milwaukee) wants to let the others do the diagnosis - they just want to treat the symptoms and leave the long term issues to others. The Children's specialist wants to see how her symptoms progress, what's next, how she does over the next few months. It has been almost 2 years now since she got her first pneumonia. Until then, she was a perfectly healthy child. She had almost never been sick. She had never even had an ear infection. My hope is that we can get her back to that point, but deep down I fear that those days are gone.

A used to be insanely jealous of when her sister got ill. She wanted the attention, medications, even the dr's visits. She has now seen firsthand of all her sister has to go through, and wants no part of it.