Guest guest Posted July 3, 2002 Report Share Posted July 3, 2002 Christy Try to stay positive, I know it's hard when coping with daily exercises, appointments, difficult decisions etc. When I was pregnant with the 20 week ultrasound detected a kidney problem, which we were told was indicative of Down's Syndrome. We worried & prayed for the rest of the pregnancy! NIck doesn't have DS but,he has tort/moderate plagio & hydronephrosis(may need surgery in future). Drs figure tort was caused by him being so large( 9lbs. 2.5ozs/ 23" long) and me being so small 5' Through all his PT, deciding to band him and having a 3.5 yr old as well, we are keeping a positive outlook. OF COURSE THESE GROUPS HELP!!!! In fact it was a member of the tort group that convinced me to go with banding...Dr had a wait and see attitude! Also, did you know that everyone's face is assymetrical to a certain degree! Joanne & BC, Canada evaluation: I should be thrilled, but... Well...we had a very short evaluation w/ CT yesterday. After almost 200 miles of driving (Abby cried for 1 1/2 hours of it...teething, I think), we were maybe 2 blocks away when somehow the road made a "Y". Mapquest didn't tell us about a "Y" in the road, and naturally we had to take the wrong arm which spit us out onto some horrible, traffic ridden thoroughfare. Suffice it to say, we were a half hour late But Charlotte was gracious and spent about 15 minutes w/us. The great news is that repositioning has been very effective. The plagio is mild, and continued repositioning should take care of it. If we want Abby to have a band, Charlotte says she'd only need to wear it for a short while. So that is great news, albeit bittersweet. It seems that her facial asymmetry would go along w/ moderate or severe plagio. The docs originally had dx Abby w/ a rare birth defect where one side of the face is smaller. That's how we ended up at the specialists office who said, "No, no. It's plagio/tort." That's part of my quandry over her ear & facial asymmetry. I want to believe that it's part of the plagio/tort, but what if it IS a birth defect? I was actually hopeful that I could put a helmet on Abby and everything would pop right into place. I do know that she is much more symmetrical since she's been off her flat side, so maybe things just take time and I need to have patience. Gads, I should be thrilled, but here I am panicking that her problems are permanent. Her tort is moderate, so maybe the pull of the neck muscle is restricting growth on that side of her face/head??? Tell me to keep thinking positively and be patient. Everything has been going so incredibly great, so we should have every reason to celebrate. I didn't know that such worrying came along w/ motherhood. Cheers? Christy (mom to Abby ~ 3 mos & 3 wks old)PS: We got some new repositioning & tort stretching ideas. Will have to share them at a later time.For more plagio info Quote Link to comment Share on other sites More sharing options...
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