This is the story of our daughter, Emily Marie. Emily was first diagnosed with interstital lung disease after she suffered respiratory failure with diffuse alveolar damage as a newborn, but she now has lung damage more consistent with another form of interstitial lung disease, bronchiolitis obliterans.
Wednesday, April 21, 2010
Back to a Normal Routine
New pictures taken the past few weeks are above. Some were taken on the Heritage Trail in Madison, then the others were at the Boys Club with cousins Daisy and Lilly. Funny, Emily immediately thinks she is supposed to get into her wrestling stance to pose for any pic at the Boys Club. Silly girl!
All in all, Emily is doing fairly well right now. She returned to wrestling practice tonight but didn't last very long before she plopped down on the ground on her belly during the middle of a drill and refused to move. Usually this is a sign of de-satting and needing oxygen, and I fully expect that is what happened this time, but as Daddy had forgotten her oxygen bag and pulse ox, there is no way to tell for sure. At any rate, she came and sat on the bleachers with me and would not go back out there the rest of the night.
She did weigh in for next week's tournament at the Boys Club...weight still up a bit at 48 pounds. It will be interesting to see who they pair her up against next week for Championship Week.
And this is totally unlike her, but she is choosing not to wrestle at the Grizzly Iron Man this weekend in Franklin even though she knows there are trophies and other prizes up for grabs. Her reasoning is that she does not feel too good and thinks it might be better to just watch the boys this weekend, so long as she can still go to State next week. She came to this conclusion after clarifying that the Iron Man would have boys for her to wrestle, whereas State Finals would only have girls. I think she is still feeling skiddish about wrestling boys after being thrown last month.
When we got home tonight, she pretty much went straight to bed, choosing to skip dinner. Not like her at all! I'm hoping that maybe she is just tired and not coming down with something.
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Sounds like she knows what she needs which is great! To have some innate sense of what she is up to.
ReplyDeleteI love the pics and love seeing her go go go. And the smiles say it all.
2 questions: do you have a portable pulse ox? Do you bring it everywhere or just to sports things?
Go Emily!
We do have a portable pulse ox. We don't always take it with us everywhere anymore, but we used to. We do take it with us when she is sicker than normal or when there is a high probability of her having trouble, like sports, outdoor time in the heat or cold, when she is going to be out of the house several hours, etc.
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