PIPERRetrun to 22q Stories
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Piper hit 3 months old and just stopped growing. She was 20 days old and in the hospital for a fever of unknown origin and she would projectile spit up out her nose always. She’s been on zantac since 20 days old has now since switched to prevacid. She was diagnosed as failure to thrive with short stature. She was born in October 2006 and it took close to a year to find out what exactly she had. I was at work when I got the call. She is now 3 and is doing better still tiny. Had surgery last April f or tubes in her ears for conductive hearing loss, and an orthorscopic cardiac procedure to snip the ligaments holding her cardio vascular ring in place. We also found out last year it was pushing on her trachea as well as her esophagus. She’s been a sickly kids immune system is week and with the chronic reflux she always gave herself Pneumonia, she also has chronic eye oozing a blocked tear duct they say but it always leads to an ear infection. Piper was/is developmentally delayed but early intervention worked wonders for her. She is in pre-school now 4 days a week and loves it. The school adapted things to her level with out her even noticing so she didn’t feel different. I think that idea is wonderful. She is child # 6 for our family. Yours mine and ours. So she’s pretty self reliant and pushes to be like her big brothers and sisters. Her little sister is the same size she is, they share clothes and shoes and diapers and she’s only 1. I wouldn’t have it any other way. None of us have VCFS it was a fluke thing. It’s scary at first but it is something you learn to live with, like any issue someone may have. We make sure she knows that no matter what she can try whatever she wants to make her happy. We are waiting until age 4 or 5 for her next surgery, which is the herniated belly button, and she needs to have her palate function rechecked as she still aspirates if she re-fluxes or gets sick, and if she drinks the wrong way. We are still fairly new at this too, there is still so much unknown like will she grow, is she going to have learning disabilities, ADHD or any other behavioral issues ect.. Only time will tell and support. Piper has 6 siblings.. 13,12,10,7,7, she’s 3 and 1… so support she has.. feel free to ask questions believe me it helps to have someone that knows what its like.