Miss D

Well, I have gotten several emails asking about Miss D...I've just been feeling frustrated, discouraged & helpless & not feeling like talking about it. Really, she's great. She's just fine. She could be so much worse. She's beautiful & perfect. She had her appt at OHSU. To me, the appt was silly, pointless. They don't have any answers. We have lots of questions. There lies my frustration. They want to wait until D is a yr old for the MRI. Her ped down here would like an MRI down sooner. My sis & I have connected with a Yahoo group for KTS & SWS. Jill has been able to connect with another mom who has a 7yo w/ KTS. Through connecting with another mom...Jill is getting more questions answered. The other mom is recommending that Jill have the MRI done sooner. The MRI will tell whether she has an arteriovenous connection. I am SO GLAD that she has found somebody that has been down the same road. D also had massage therapy this past week. She responded well to treatment & they seemed to be able to get the excess blood out of her ankle/leg. Jill is a massage therapist & the therapist that treated D showed Jill some techniques that Jill will perform as needed. Anyhow, sorry for keeping ya hanging...I'm just depressed & frustrated about it & the lack of help we're getting.....