When I took Super H in for her 2 year well check this June (which I know was 7 mos late, but track with me), our totally awesome doctor suspected that she might have neurofibromatosis. At that point she recommended blood work that has to be done by a genetics doctor. There is a 5 mo waiting period just to make the appointment, and then there is a several week wait to get the results.
We are still waiting for our appt to even get into the doctor. I have had a couple of people ask me lately what was going on, so I thought I'd blog the update. We're waiting to wait, lol. Meantime I'm trying NOT to think about the 2 people featured on TLC's "My New Face" who had horrible forms of this disease. I got sucked into the show before I knew what they had. Then I walked away from it.
Here is a good link on neurofibromatosis if you want to know more......http://kidshealth.org/parent/general/aches/nf.html
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