Little Rock, Arkansas
Hello everyone! My name is Kimberly Hines and I have a son named Aidan who will be 3 years old in October with MDS. I was sick all through my pregnancy with him and had a sonogram at 6 months that had discovered Aidan’s femur bone was shorter than average.
I was referred to a specialist who did another sonogram and advised me that a short femur bone could be indicative of DS, but that He “had only been wrong one other time in his whole profession and my son did NOT have DS.” I left the clinic feeling relieved with the assurance he had given me. I had refused any type of blood testing for DS during my pregnancy due to the fact that for the most part it was not very accurate. Aidan was born October 9, 2003 as a healthy beautiful baby boy. At a 6 month ‘well’ visit Aidan’s pediatrician voiced her concerns about the possibility of Aidan having DS. Apparently his well visit prior to that a new nurse that the clinic had asked Aidan’s pediatrician if he had DS, she laughed it off and said “No! That’s just Aidan!” At this visit she noticed only 3 things that were indicative of DS: the epicanthal folding of the eyes, low muscle tone, and tongue that seemed quite sizable considering the dimensions of his mouth. Honestly I was stunned and honestly, quite angry that she would think this about Aidan (which was, of course, only my initial reaction.) I couldn’t understand why he wasn’t diagnosed at birth if he had DS.
After Aidan’s blood work was taken and sent to the lab it took two weeks to get the results back, which seemed like forever. During this waiting period I had done an extensive amount of research regarding DS. This particular website is where I found a majority of information on MDS. With all of the information I was able to obtain I was already convinced of his diagnosis before we met again with Aidan’s pediatrician. The lab had tested 20 cell lines, only 6 coming back with the extra 21st chromosome.
I immediately put Aidan into a day school where he would get all the therapies he needed in order to develop. We had tests run on his heart to make sure he didn’t have a congenial heart defect, had x-rays on his neck to check for any problems and he checked out just fine.
Early this year we switched schools because of an incident that had happened and found a new school called Access. They have an amazing program for kids with special needs and have just made a world of difference in his speech, motor skills, and feeding. It was probably the best move we could have possibly made for Aidan. He is almost right on target of where he should be developmentally.
I never thought I could love another human being as much as I love him. He may have a few extra chromosomes, but he is perfect in every way and I would not change one hair on his head!
After Aidan’s blood work was taken and sent to the lab it took two weeks to get the results back, which seemed like forever. During this waiting period I had done an extensive amount of research regarding DS. This particular website is where I found a majority of information on MDS. With all of the information I was able to obtain I was already convinced of his diagnosis before we met again with Aidan’s pediatrician. The lab had tested 20 cell lines, only 6 coming back with the extra 21st chromosome.
I immediately put Aidan into a day school where he would get all the therapies he needed in order to develop. We had tests run on his heart to make sure he didn’t have a congenial heart defect, had x-rays on his neck to check for any problems and he checked out just fine.
Early this year we switched schools because of an incident that had happened and found a new school called Access. They have an amazing program for kids with special needs and have just made a world of difference in his speech, motor skills, and feeding. It was probably the best move we could have possibly made for Aidan. He is almost right on target of where he should be developmentally.
I never thought I could love another human being as much as I love him. He may have a few extra chromosomes, but he is perfect in every way and I would not change one hair on his head!
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