Friday, June 7, 2013


Inspired by the video of the little boy who was born without eyes, I have been really thinking and preparing myself for someone to ask me what is wrong with Adriana. Whether it be because she looks different or because she is showing off her button chewing her shirt. We have had a few incidence with her color changing, her legs were purple as I was wearing her and a lady stopped me and told me, I was glad she did for a normal baby it would be an issue but for Adriana purple is ok on her limbs. I explained what was wrong and she just looked at me like I was clueless and proceeded to tell me her grandbaby had to go to the ER for circulation being cut off due to being wore. I thanked her and walked away, it irked the crap out of me that she blew off what I said and acted like I didn't know what I was talking about. Mother knows best 99% of the time, I figure its because I look 16 that she gave the impression this lady doesn't have a clue. Any ways, I really didn't think people could be so cruel and do that until a few moms on the Noonan syndrome page brought it up and then the video. Kids I can see, there kids and curious. Emma doesn't see anyone really different, she is shy but she isn't going to just say momma what is wrong with that kid? Maybe because Adriana? I'm not really for sure. We have a family friend who has a son with downs, she acted shy, he is older but she played ball as did TL neither really acted like anything was different. Before Adriana I always thought that kid in Wal-Mart screaming his/her head off was just being a brat or needed there butt spanked, after being at therapy and seeing all the different kids with different things going on I realized maybe that kid screaming got touched by something different, or maybe the weather is really bothering them. There are so many things that it could be. Adriana has a touch of what we are thinking is sensory issues, which we are working on but it takes time and there will be off days (everyone has off days were human). The whole point in me writing this is, before you judge tell yourself maybe this kid is having an off day, yes there are some cases were the kid just needs a spankin'. A smile will go a long way! :)

Wednesday, May 29, 2013

Adriana's syndrome

Most kids with noonans have PTPN11 mutation, Adriana has CBL gene. She actually has Noonan like syndrome. Her type is really rare.