Friday, July 17, 2009

I didn't post last night and I'm sorry. I was REALLY exhausted and the girls were needing a lot of attention. Yesterday was a strange day but first things first.

We continue to learn more and to be amazed. My dad gets here Saturday with his laptop and when I can type I will post a long post with lots of stories about how wonderful they have been with Lila.

Yesterday we had blood work, first round of allergy testing, kid exercise test, meetings with docs, parents group. Her first allergy testing was unremarkable. They did foods mostly which we have never had trouble with and goat and chickens (do they have dander?) and we were happy to find she is not allergic to farm animals. The exercise test showed the ways that her asthma does flare up which gave us another piece of the puzzle, as the doctors have been saying. Lila was a champ. She got her ph probe out at 5:00 and we got to come back to RMH. She was so happy. She was running around yelling, "I'm free! I'm free!" We will find out the results of that today.

Samantha is mostly doing really well. She is starting to wear out a bit. We are all looking forward to the weekend. She met with the child behavioral social worker at the hospital yesterday who was so good with her. Not many worries with Samantha evidently. The social worker, Jennifer, said that Sam did mention that she used to feel sad because mommy always left and went to the hospital with Lila, but now sometimes daddy goes and mommy stays with her. I'm glad we've made that change. She also told Jennifer, after being asked to help clean up her toys they had been playing with that she "wasn't really a clean up kind of girl." Evidently Jennifer then asked her who did the cleaning up at home and Sam's answer was ,"no one." Oh well. One more thing to work on when Lila's better.

Now for the strange. The hospital we are at, National Jewish received a gift of 10 million dollars yesterday for pediatric asthma work. So there were reporters, photographers, and even a camera guy. They somehow decided ( I don't know how) that Lila would get pictures and we'd get interviewed. So between tests and caring for her we (mostly Ben) were talking to two different reporters. It was mostly cool, although the cameraman was a little annoying and didn't seem real aware and respectful of the fact that we were running a test on her while he was filming. But the other two were great as well as the hospital PR guys who were around. So check out denverpost.com. I haven't been out to see the actual paper (just the website) but I think our girl made front page! Isn't that crazy? Only Lila.

I continue to be grateful for the letters, emails, phone calls, comments here and the prayers. It seems so odd to have real, solid hope again, but I do. I am exhausted like I get when we come home from days in the hospital. But it's different too - like a postive tired. I am starting to really believe that our life is going to change. Thanks all.

1 comment:

  1. Saw sweet little Lilac on the front page of the paper! So glad you are getting some answers and I continue to follow your journey and keep you all in my thoughts.

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