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    Posted June 17, 2014 by
    sreiners
    Location
    bemidji, Minnesota
    Assignment
    Assignment
    This iReport is part of an assignment:
    Raising a special needs child

    Rare Genes

     
    Starting my story of raising a child with special needs goes back 9 years although I did not know right away. My son Kades pregnancy was normal to my other 2 sons and I knew he was a boy. Ultrasounds all where normal and I was 28 years old so testing for down syndrome was not considered. Although the delivery was a little hard due to the umbilical cord being short and heart rate dropping his deliver was for the most part normal. Also after birth he did not have any real problems so we assumed all was fine. It wasnt until almost 1 year we realized something is not right. He was unable to crawl or walk due to such lax muscle tone. Instead of getting his knees up to crawl he would do the splits. Finally after using some special harness to hold his legs in he crawled and walked. That is when we heard the words. I think he has down syndrome. The dr looked at his hands and feet and knew before we did the test. It came out it was Mosaic translocation down syndrome. The facial features didnt show as prominent so we were unaware for so long. He was born with the small hole in the heart but it healed shorty after birth and was considered normal. Later we did have another daughter my 5 yr old Abi happy healthy and developing above her level in communication. A year after my daughter we became pregnant again and this time we found out at 20 weeks she had something wrong. At that time through ultrasound it looked like the cerebellum portion of the brain was much smaller and fluid was around it. From what they could see before birth it looked like dandy walker syndrome. I had my daughter sophie by csection only a week early due to failure to thrive. she only weighed just over 3 lbs. She had a heart condition ASD, twisted legs and spine..We did her chromosomes at birth and she has Trisomy 10 and tunrers syndrome. Sha had a gtube placed at 5weeks and went home after 6wks in NICU. At 2years she had open heart surgery, at 3 years she had to have adenoides, tonsils and ear tube placement surgery, She just turned 4 in April and this summer will unergo major spine surgery for a severe scoliosis. Every year since birth she has been hospitalized with pneumonia and lifelinked 2 times to the twin cities from Bemidji. I stayed at the Ronald Mc donald house many times when my daughter was born at the U of M and her heart surgery. My daughters spine surgery will need to take place every 6 months for the next 6 years. This is a life of a special need parent and I just scratched the surface. Even with all the time in therapy and dr appointments. Siting in a hopsital room for almost a month with my little child It is worth everything they have taught me, showed me and opened my eyes to see. They are resilient, happy, know how to appreciate and not take for granted what we all so easily do...our health...

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