Friday, February 25, 2011

BIG Changes

Pulmonology appointment went well. Braylon was started on antibiotics and is doing much better. He was also started on inhalers, so mom's life just got a lot easier!!! No more bedtime Pulmicort battle. HOORAY!!!!!

And then there is Emily....Emily blew the very best PFT's of her entire life, which is fabulous except for one little thing. She is still breathing like crap!

So what does that mean?? The pulmonologist says that her symptoms do not seem to be coming from her lungs, and they want us to go back to the cardiologist, especially with the problems she has had with fluid retention the last several months. That appointment is scheduled for March 7. Hoping for answers, although not feeling too optimistic that we'll get any at this point. :-(

I was looking back over pictures today, and wanted to share a few of exactly what I'm talking about. I am hoping the computer will let me load them in the right order, but not so sure about that. I'll do my best.....

Emily in March of 2010 the night before the Folkstyle State Finals:

Now, this is Emily the following month wearing a wrestling singlet at the Boys Club Freestyle City Championship. She's the little girl in red. There had been a several pound weight gain in a few days time, back when her liver had become enlarged, and this picture was actually taken after all that had resolved, so believe it or not, she looked worse about 2 weeks before.

To further demonstrate how fast this came on her at that time, this is Emily on Easter morning.

And Emily less than a week later, so swollen that none of her clothes fit her anymore. This outfit was actually the best thing we could come up with because literally NOTHING fit her. We took her to the doctor, and that's when they found the liver enlargement.

She remained swollen thoughout April:

But was back to normal by May:

And since then, we've learned that it doesn't do it nearly as bad if we treat it with oxygen, although nobody will give us a reason for that. But it's happened over and over since, and she will puff up a few pounds, then lose it. Nothing as severe as that first time.

Here she is on vacation in Florida in July:

And then a few days later:

And there are many more examples, but I think you get the picture. She wakes up one morning all puffy, then one morning some time later, she'll wake up and be back to normal. The left arm and left leg are bigger than the right when she's like this. Not huge differences, but about an inch in her arm and a little under 2 in her leg.

This last example is due, at least in part, to steroids. None of the other examples were though. Emily at her brother's birthday party Feb 12:

And then 2 days later on Valentine's feeling absolutely miserable!

Part of me wants me to allow allow them to convince that she is just a chubby kid and all this is normal. But then I hear the way she breathes..... And when the doctors were telling me she breathes that way because of air trapping and it wasn't something fixable, then it was a little easier to ignore it. But then they tell me now that her symptoms are not caused by her lungs, then someone please tell me what is causing them.....

So what do you all think? Am I overreacting?

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