7.13.2006

Diagnosis...fugetaboutit

It's been a while since I've shared anything regarding Delaney's doctor's appmt's so I thought I'd give you an update. We recently received great results from tests that were done indicating that a mitochrondrial disorder doesn't seem to fit the bill. Although it can't be ruled out entirely without a muscle biopsy, our doctors don't feel that she has this disorder. That's wonderful news! !! We met with a new specialist yesterday and it was kind of like my dream doctor's appm't- like the tv show House, minus a whole team of doctor's collaborating. He totally looked at the big picture and was able to do that by asking us questions for about AN HOUR about my entire pregnancy, delivery, and the last 22 months. Then he did a physical exam that lasted about 15 minutes, then another 45 minutes of talking with us. WOW! It was so encouraging to have someone that was so interested in every little detail of Delaney's past. One thing I didn't like about him was that he said Delaney's face looks dysmorphic. I guess I am just totally in love with her and that makes me see her as just perfectly beautiful. I always thought her mouth was so pretty, but it's dysmorphic apparently. That kind of stuff just hits you in the gut though, you know?! He must have repeated about 40 times, no joke, that it's great how Delaney seems to be making such nice progress. Not to say that I don't think it's great that she's always making progress, but that's all we ever hear. Don't the doctor's think it's interesting that she's almost two and still can't walk without assistance and doesn't speak a word yet?! It's hard to believe that they can't put a finger on what is causing her delay. We still don't have any diagnosis, probably never will, and that is still pretty frustrating. It's just a word, though, to describe a condition, so why are we so stuck on learning this one damn word?! A word isn't going to help us in any way, unless of course there is some sort of treatment available that we're not yet doing for her. So, we're meeting with one more doctor next month, a geneticist, and that will be our last hope in learning what this word might be. After that, we'll continue to only do follow ups with a few of her specialists and will be able to stop feeling so concerned with finding out what we probably never will. Ahhh, that will be such a relief to know that we've covered all our bases and can do nothing more.

2 comments:

  1. Oh, Denise. It sounds like things are headed in a positive direction as far as the testing nearing completion. I am sure it is difficult to wait on doctors and hear their comments. I'm not a mother, but I can only imagine how those words can hurt. Praying for you, Paul and Delaney and some peace of mind soon.

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  2. Anonymous7:02 AM

    ((HUGS)) it is so hard with not knowing... we've been through that a little. so glad you got to me with an 'interested' dr. and you are surely right, delaney is beautiful :)

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