Nov. 19, 2008
Mercy's Appointment Updates - November.
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Hello Members of the Mercy Fan Club!!! We have GOOD news on the Mercy front this month. Ever feel like a pendulum? That's how I have felt the past few weeks.  - Mercy's blood pressure is back down this week. That is good as it means that the two months it was a little high was just because she had stressful appointments beforehand, NOT that she is having a tough time with the prednisone. That buys us some time to wait and see (Again) rather than have to jump into anything in order to get her off the prednisone. -Mercy's hemangioma does not appear to have grown the past couple months. Of course, I have not been trying to taper the prednisone either, but it still has not grown. It does appear to be slightly changing, enough to hope that perhaps it is getting ready to involute (go away). The best case senario would be for it to do this on it's own without chemo. - So we are going to wait until next month. On the 16th we have another echocardiogram. If her heart is worse, then we will do the chemo. If the heart is the same as the echo in September, we will wait again. Basically if the hemangioma is not growing, and the heart is not getting damaged, we will continue as is, since this is really the best thing for Mercy. It's hard to continue to wait, and wait, and wait... even though I know it is best. But for now that is what we will do. If all looks good, lets see what it will do without the intervention of doctors.  As a side note... to all moms of babies with PHACE - Dr. Adams did say that it has been decided that these babies are too complex for it to be safe to use Propanalol for them. They are going to be categorically out of the study for it... just wanted to pass that on to you. Also - to all the PHACE families who go to the Hemangioma and Vascular Anomolies Clinic at Cincinatti Children's for your care. We are trying to get a few days a year where the PHACE children are seen on the same Tuesday afternoon and we can go out to dinner together in the evening. If you are interested in this, please let me know and I will add you to the list. I think we should all band together. Our babies are worth it. |
Comments
Nov. 19, 2008 - Untitled Comment
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Posted by Nov. 19, 2008 - Untitled Comment
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Nov. 23, 2008 - yeah!
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