Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Angel mentioned the photo albulm of our kids. You can access this by going to http://www.imdsa.com/photos.htm The User ID is: vktphipps The Password is: mds If anyone would like to add their child's photo to this password protected site, you can send your photo to Twomey at mosaicdownsyndrome@... Kristy LDSAngel77@... wrote: The Hirschsprung's was an immediate problem...well..sorta... they actually sent him home from the hospital when he was born, without having a BM! By the middle of that night, I knew something was really wrong...still no BM, and he was sooooooo distended and started spitting up the bile. So, his first surgery was at 3 days old... kind of an " emergency " colostomy, and then he had another at 4 months, and the pull thru at 6 months. (Of course, HD doesn't end with the pull thru, as much as some doctors want to tell you it does...hmph!) So... time went on, I was pregnant again, and had a genetics appt about the HD...didn't have a babysitter, so I just happened to take with me.... I could tell the geneticist was more interested in him than me...she stared at him the entire time, and finally at the end, just outright asked if she could do his blood work because, " he has some characteristics of a chromosome anomaly " she said. Two weeks later, MDS! Over that 16 mos, my husband and I agreed something else was wrong with him... but we just could not get anyone to listen to us! The ped would say he was just delayed on his milestones because of all the surgery... all those doctors, all those nurses, and no one ever saw anything unusual in him :::shrug:::: So, tell me about your son...how's the hirschsprung's....and what's leading you towards MDS?? I'll send some pictures of to you personal email...but there is also a page of group pictures on one of the sites, i can verify which....I remember when was diagnosed, I didn't know what MDS was 'supposed' to look like... ~ANGEL~ Mom to 13, Mosaic Down Syndrome/Hirschsprung's Disease Lance 17, Tyler 14, 11 Jaeda 9 and Shayne 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Thanks Kristy!!!!!!! ~ANGEL~ Mom to 13, Mosaic Down Syndrome/Hirschsprung's Disease Lance 17, Tyler 14, 11 Jaeda 9 and Shayne 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Thank you! Those children as so beautiful! Kristy Colvin wrote: Angel mentioned the photo albulm of our kids. You can access this by going to http://www.imdsa.com/photos.htm The User ID is: vktphipps The Password is: mds If anyone would like to add their child's photo to this password protected site, you can send your photo to Twomey at mosaicdownsyndrome@... Kristy LDSAngel77@... wrote: The Hirschsprung's was an immediate problem...well..sorta... they actually sent him home from the hospital when he was born, without having a BM! By the middle of that night, I knew something was really wrong...still no BM, and he was sooooooo distended and started spitting up the bile. So, his first surgery was at 3 days old... kind of an " emergency " colostomy, and then he had another at 4 months, and the pull thru at 6 months. (Of course, HD doesn't end with the pull thru, as much as some doctors want to tell you it does...hmph!) So... time went on, I was pregnant again, and had a genetics appt about the HD...didn't have a babysitter, so I just happened to take with me.... I could tell the geneticist was more interested in him than me...she stared at him the entire time, and finally at the end, just outright asked if she could do his blood work because, " he has some characteristics of a chromosome anomaly " she said. Two weeks later, MDS! Over that 16 mos, my husband and I agreed something else was wrong with him... but we just could not get anyone to listen to us! The ped would say he was just delayed on his milestones because of all the surgery... all those doctors, all those nurses, and no one ever saw anything unusual in him :::shrug:::: So, tell me about your son...how's the hirschsprung's....and what's leading you towards MDS?? I'll send some pictures of to you personal email...but there is also a page of group pictures on one of the sites, i can verify which....I remember when was diagnosed, I didn't know what MDS was 'supposed' to look like... ~ANGEL~ Mom to 13, Mosaic Down Syndrome/Hirschsprung's Disease Lance 17, Tyler 14, 11 Jaeda 9 and Shayne 3 Quote Link to comment Share on other sites More sharing options...
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