Tired, so tired...

I do feel absolutely exhausted. Ben is putting the girls down and all I want to do is go to sleep with them, but I haven't updated. So many of you have told me that you check often and all of you are who made being here possible that I want you to know what is going on, but I am tired. Like I said, it is a different tired - I don't feel beaten down; I feel hopeful.

Well. Friday we did Lila's last round of allergy testing, met with the nutritionist, and had our end of the week meeting with the doctors and social worker. We also go the results of her ph probe. Even on medicine she is still refluxing acid pretty significantly and refluxing non-acid stuff often. They said 39 times in 24 hours! The non-acid reflux doesn't bother the digestive system but it does effect the lungs and seems to be a major part of this puzzle. Another doctor is going to look at the results on Monday and we'll know more about what they are going to do then. At first, it sounded like surgery was likely - to tighten the area between her esopgogus and stomach so that she can't reflux as easily. I don't think that has been ruled out but it looks less likely. We'll know more about this piece of the puzzle tomorrow.

She also had her allergy testing done and the results were crazy. They say (and these are the leading allergy people in the country) that she is NOT allergic to mold or cats or dust mites or almost anything. She was allergic to two trees - box elder and hackberry (both of which are everywhere around in KY) and could explain why she had a rough spring. They say that she will likely get more allergic, but that's it for now. But even that, they said, could be enough to have made for a bad spring for her.

They also clarified the role of the mold exposure that she had in the parsonage that we lived in. It doesn't make a huge difference but it was helpful for us. They think that Lila likely had asthma anyway that would have shown itself. Even though she's not allergic to mold, they think that living in a house with concentrations like that was an irritant. She would not test allergic to cigarette smoke either, but living in it would really bother her asthma. That was their comparison. It's nice to have an expalnation finally for what set off this chain reaction and that that exposure was only exacerbating something that was already there.

Plans for this week are for minor surgery (but it feels major to me!) to do a bronchoscopy, a swallow study, another exercise test, and a series of breathing tests. Tomorrow we actually had nothing on the schedule at the hospital. We are supposed to go in around 9:30 and it is almost certain that they will have things for Lila to do. It's been such a crazy weekend though that I would love it if they would let us come back to the RMH after that.

Lila is also really tired. She and Sam both are showing signs of the stress. It's so hard on them. Today we took them to the Disney store. They were each given (by several people) a little bit of money to spend while we were here and that's where they wanted to go. While we were there several people recognized Lila from the paper and the news which was wild. I was also getting a couple of things. Someone before we left gave us a Disney store gift certificate and I used it to buy toys to give to Lila after a tough procedure - blood draws or IV's or the ph probe. And then we'd give Sam one then as well. It seems to make it more bearable for Lila. Well, someone stole our stash of toys out of our car, which upset me so much. So I was picking up a couple of things so I would have something if they needed to stick Lila tomorrow. When the Disney store manager heard who Lila was and what had happened she gave each girl a fairy doll for free. This whole experience has shown me that I am too cynical about human nature. We have been helped so much by total strangers, and by those whom we know that it might be hard to be cynical again.

The hospital people have been really terrific. They take good care of Lila. Before there is a procedure someone comes in and talks to Lila about what's going to happen to her. And if it is a painful thing, they provide distractions (bubbles and viewmasters seem to work well for her) and those things really help. Lila has started having regular nightmares about being hurt in those ways and I hate it. The social worker says that she is showing signs of trauma but that she is dealing with it well. I hope so. I hate this for her and so want to put this behind us for good.

Hope and fear really do march side by side along in me. I keep praying but lately my prayers are just, "God,..." and then silence. I think God can see my heart and knows the rest. Thanks to all who are lifting us up in prayer - the emails and letters have made a tremendous difference for us. We miss you all. We miss home. We miss church. We miss our friends. We knew this wouldn't be fun and it isn't, but the care we are receiving here is better than even the best I had ever imagined. Take care all and know we love you.