So, I've told everyone about my daughter's struggle with her blood disorder and Ehlers-Danlos. We went to Nemours on Friday to see a geneticist in an effort to put some of the pieces of the puzzle together. We found out the following:
1. She doesn't have classic Ehlers-Danlos, but does have an undefined connective tissue disorder
2. She needs to be evaluated by a cardiologist, an opthalmologist and an infectious disease specialist to see if this disorder has targeted other areas of her body (other than her knees)
3. She will continue to have bleeds in her knee until she is able to have the allograft, which will stabilize the sublaxation.
4. As a result of these bleeds, she will need to be hospitalized in order to receive DDAVP and Factor VIII so that the tissue will absorb the blood. She will receive 4 infusions - one every 12 hours; probably every 2 weeks, until she has the allograft.
5. Lastly, she cannot have the allograft until the necrotic tissue that she has, on top of her knee, heals. It is kind of yucky, so I won't post a pic. However, the docs are considering a hyperbaric oxygen chamber to speed up healing.
So, this is our life right now. We thank God, everyday, that she is still so upbeat and in good spirits. She never complains or whines about her condition. She is full of faith for God and continues to encourage us. Please continue to pray for her as we push forward on this journey.
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