Living with HPP- Sierra

Hello..my name is Shelly and I am Sierra’s mother..I had gotten pregnant with Sierra and thought everything was fine..the ultrasounds of her came back perfect and there were several done..even the day before she was born..she was breech, so I had a c-section..the day after she was born we found out that she actually does have Infantile Hypophosphatasia..she was fine her first 3 months then she started going down hill with her first pneumonia and failure to thrive..she was just being released from the hospital at 3 months when the nurse strapped her into the car seat and broke both of her clavicles, her right arm and the ribs on her right side..after that, she had numerous bouts of pneumonia and hospitalizations until she was 2..she also had a g tube inserted into her stomach because she wouldn’t eat and what she did eat she aspirated into her lungs..the pneumonia slowed down but then she started the surgeries..she was 18 months when we found out she had hydrocephalus and got her first shunt..at 2, she had craniofacial surgery done because all of her sutures were closed..she has had numerous shunt changes through the years..she finally got rid of the feeding tube at age 7..she did still have several bouts of pneumonia and hospitalizations throughout the years..she had major scoliosis surgery in 2017 after having a halo for weeks and she came through with flying colors..her shunt failed again so the Dr took it out because he wasn’t sure if she needed one or not..that brought on head infections and lead to another surgery for chiari malformation 2..she was in and out of the hospital for 5 months due to the surgeries and infections that just wouldn’t stop..she has not had a broken bone since she was age 2 that we are aware of..she is very small, being 3ft 2in and 60 pounds..she has several areas of bowing in her legs and arms..she is finally doing quite well again..she cannot walk so she has her electric wheelchair to run around in which she works really well..she also scrooches on her butt to get around..she has the mind of a teenager but also second grade level..she has just turned 21 in May of this year and finally graduated high school!!! My Beautiful Child is the strongest person that I have ever known and she continues to blow my mind everyday with her strength and determination..she is an amazing young lady with so much love in her heart, a wonderful sense of humor and of course, the teenage girl attitude lol..she says she plans to live with me forever and she wants to start a jewelry business..she is very much loved by all of us and we are all so very proud of her! We were told she wouldn’t make it passed 6 months old..well, she showed them wrong didn’t she?!?! And, just to mention,Adrian Selesky-Eoga has been an awesome support for Sierra and I both..she is an amazing woman!!!