Wednesday, May 11, 2011

big time update


Wow so much has happened since I last update you! sorry i havent written sooner but as you can imagine, life is crazy:) RJ was moved to pod A!!!! this means its the healthy baby pod and he is coming home soon! yay RJ! They have him in his own room which im so excitetd for! he has been sharing with a ton if different babies for the past week and a half! They broght him a fun light up bouncer! he is obsessed with it he stares at the lights and its a whole new adventure for him!
As some of you may know, RJ was born with a literally purple leg, which the doctors diagnosed as a bruise right off, Aaron and i knew it was not a bruise so we have kinda been keeping a close eye in it! it has been spredding up the right side of his body, sort of a modeling, not as purple as birth, but a distinct different coloration from the left side of his body. at first they thought it has something to do with his stroke, since the stroke was on the right side, it may have affected his left. They did an ultrasound on his hips and it came back completely clear of clots or anything like that, so the doctors left it at that. On sunday, Aaron noticed the modeling was on his face, just completely spredding! So we called the his room and pretty much demanded that they take a closer look at it! We could just sense there was something more! So went and did some research and found an article of something it MAY be, Cutis Marmorata Telangiectatica Congenita (CMTC) feel free to look it up on google, it comes up but kinda complicated, but there are only 200 reported cases of this! what are the odds that he would get THIS too!?? The dermatologist came in the next day to take a look, and they definately confirmed that this is what he has! what is the luck that our little buddy got this along with everything else!! so they automatically took a bunch more blood tests to rule out a bunch of things that come along with this. The optamologist came in today to eliminate glaucoma, and yay it came back clear! they also ordered an ultrasound on his kidneys to see if there were any cists on them, they also came back clear! Were very hopeful that everything will be okay with him! He is a fighter! All of the things with this will be able to followed up on outpatient, so were hoping he will still be scheduled to come home on monday or tue!! we cant wait to get our buddy home! even thought the nurses in the nicu will miss him they all say they have a crush on him hahah i dont blame them! love you rj!
love tiff, aaron, sage and rj

No comments:

Post a Comment