Friday, June 10, 2011

SUYL: Special Needs Kids

Over on Kellys Korner Blog, they are doing a link up of kids/adults with special needs. Kelly does a wonderful job linking people together who are sharing similar situations.
My story with Sam starts with an extremely complicated pregnancy that ended with him being delivered early. After our NICU stay (I am a nurse) I just knew that there was something wrong with him. His first year of life was spent in and out of the hospital with many infections and difficulties clearing them up. At 9months they said he had the immune deficiency, at 13months we started IVIG. At that time he started to do really well. When he was 2 we started having lots of GI issues, and bloody stools. He was diagnosed with irritable bowel syndrome (although this diagnosis) I am not sure is accurate. Shortly after that he was diagnosed with a bleeding disorder called platelet agreggation dysfunction. Essentially his platelets don't work well, he is a high risk for hemorrhage. He randomly bleeds, but we are praising God that he hasn't had a big bleed in quite a while.
He is a happy beautiful loving little boy. I am so thankful for him. For the journey we are on, it is making us all better people. I am anxious as we look forward to him going to school in the fall, and all the uncertainties medically. But we are happily moving forward:-) If you are curious about any of his medical issues, I have TAGS on the sidebar of my blog such as IVIG, hematology, immunology etc.
If you have hopped over from Kelly's welcome, glad you are here. I would love to hear from you:-)

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