Friday, August 30, 2013

Labels....there everywhere

Why is it that as soon as people hear DS they ask the parents age? Yes, it is increased risk after 35 BUT the majority happens in people under 35! Why you ask? Because most 35 year olds have stopped having kids!

Elizabeth has several diagnosis that are common in DS. Some to mention were the Intestional issues, Laryngomalacia,and hypothyroidism. When people hear these things they freak. I find they freak more if they're in the medical profession than personal friends. As y'all know Elizabeth was admitted to the hospital once again. She contracted group B strep. I know strange. But if it is strange then Elizabeth has it. 

Once they realized Elizabeth had DS and contracted "late-late" onset they are now doing testing for her immune system. As if this mom doesn't have enough to worry about. I remember being diagnosed and reading all the things she was more likely to have. I soon found out you didn't read that for fun you took that as it came. It felt like if it was only a 1% increased chance they list it. At first it felt like my child was being singled out. I have soon come to realize that isn't the case. 


Elizabeth also fits in another category. She is in the "metabolic" category. Elizabeth was diagnosed with Pyruvate Dehydrogenase Deficiency. Short and sweet version is she can not metabolise sugars and carbs. She will forever be on a ketogenic diet(aka Adkins). So now when they read that in combination to DS needless to say everyone is terrified of her. From a mothers stand point I can understand. 

I have heard more times that I will or would like to count the things Elizabeth would never do. But by Gods grace she has surpassed those. I was told that she would never make it to birth and look at that little girl now!  I am reminded of her Pediatrician that had CP. He never let his "labels" stop him. That is my dream for Elizabeth. I pray she is never limited by what they "think" she's capable of! I pray that she continuous to amaze the doctors the way she has her parents! We couldn't love her more. 

I was the lucky few who was never discouraged. I never got the abortion talk. Instead my OB had a mutual DS  mommy contact me. I was thrown in a situation of love and support.  I do not think I could have any other OB for my pregnancies. I was asked by a nurse tonight would I still want children. I wanted to burst out laughing. The DS isn't the scary part. Sometimes I already get baby fever. But shh.... That's our secret. It usually doesn't last long. Elizabeth will interrupt my concentration by the occasional vomit all over me and I am soon reminded that I still have one. One very special one!

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