Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 Carol, That is fantastic news…you should celebrate!!! Way to go !!! Sue Mayer From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Carol in IL Sent: Tuesday, July 08, 2008 3:57 PM To: DSIE Cc: Downsheart Subject: [DownSyndromeInfoExchange] WHOOO HOOOOO!!!! We spent our morning visiting with our local friendly cardiologist! First bit of good news... 's ban on getting her ears pierced has been LIFTED. :-) So if she wants, we can do it. Even better news!! Her heart has remained the same size since her repair. For those who don't know, has TOF and AVcanal- had a BT shunt at 8 weeks and major repair at 10 months. At the time her pulmonary artery valve had to be sacrificed to fix the stenosis and Dr Ilbawi replaced it with a flap of gortex rather then use any other type of valve on the market at that time because he was not happy with the number or replacements those kids were having to endure....so that is what the child has for a PA valve- gortex! We go every year to monitor the size of her right ventricle, watching for signs that it's working real hard and may be time to replace that gortex with a valve. Since her heart has remained the same all these years, she has passed a critical landmark and he *thinks* that we *could* be safe now til her TEEN YEARS!!!!!!!! WOW THANK YOU LORD... can you believe that??? They have been telling me every year that it would positively need replacing between the ages of 4-7. Disclaimer, disclaimer, disclaimer.... as the card said- he is telling me this with the understanding that things could change at anytime, but in his experience, the odds have now turned greatly in her favor. :-) :-) I feel like champagne... but, am taking the cat to the vet instead. LOL Carol in IL AIM doihavtasay1 GigaTribe doihavtasay Mom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS. My problem is not how I look. It's how you see me. Join our Down Syndrome information group - http://health.groups.yahoo.com/group/DownSyndromeInfoExchange/ Listen to oldest dd's music http://www.myspace.com/vennamusic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 Great news! I never even thought of a problem with ear piercing/cardiology. Faith would not sit still for that at this point anyway! ette -------------- Original message from Carol in IL : -------------- We spent our morning visiting with our local friendly cardiologist! First bit of good news... 's ban on getting her ears pierced has been LIFTED. :-) So if she wants, we can do it. Even better news!! Her heart has remained the same size since her repair. For those who don't know, has TOF and AVcanal- had a BT shunt at 8 weeks and major repair at 10 months. At the time her pulmonary artery valve had to be sacrificed to fix the stenosis and Dr Ilbawi replaced it with a flap of gortex rather then use any other type of valve on the market at that time because he was not happy with the number or replacements those kids were having to endure....so that is what the child has for a PA valve- gortex!We go every year to monitor the size of her right ventricle, watching for signs that it's working real hard and may be time to replace that gortex with a valve. Since her heart has remained the same all these years, she has passed a critical landmark and he *thinks* that we *could* be safe now til her TEEN YEARS!!!!!!!! WOWTHANK YOU LORD... can you believe that??? They have been telling me every year that it would positively need replacing between the ages of 4-7.Disclaimer, disclaimer, disclaimer.... as the card said- he is telling me this with the understanding that things could change at anytime, but in his experience, the odds have now turned greatly in her favor. :-) :-)I feel like champagne... but, am taking the cat to the vet instead. LOL Carol in IL AIM doihavtasay1 GigaTribe doihavtasayMom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me. Join our Down Syndrome information group - http://health.groups.yahoo.com/group/DownSyndromeInfoExchange/ Listen to oldest dd's music http://www.myspace.com/vennamusic Quote Link to comment Share on other sites More sharing options...
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