A HISTORY OF THIS BLOG FROM THE BATHROOM FLOOR. Sammy, my 14 year old in the picture, has a disease called Hirschsprungs. Its a bowel disorder. My previous work had a fundraiser for us to send Sam to the best doctor located in Ohio. DR Pena. We were flown by a wonderful man who is humble and kind and is a member here so I will not embarrass him. He has flown us many times in an organization called Angel Flight. By the time we got to Ohio, I was at my last straw. Sam has no nerve endings on his colon so he doesnt have bowel movements. We have has stomas, we have used tons of enemas, medication, surgery and we finally had a second surgery at DuPont to remove more colon. The hope is to find the good portion of the colon and reattach it to his anus. But something went wrong and the child went from no BM to up to 20 a day. It was a horrible year. A year I wanted to die. Some days my baby could not walk he was so sore. We spent 200.00 a week on butt cream. The little guy was so red. Thats when I looked for Dr Pena. I knew all about him. He pioneered the reattachment surgery. And he answered my email. We went out and started a bowel mantainance clinic. The idea is to keep the colon clean with one good enema daily. They take an hour. Eventually Sam and I went out and had a procedure called a Malone so the enema can enter the naval, go to the colon and exit the anus. But with Sammy, you cant leave him alone. He doesnt talk and cant tell me if the tube fell out. So I sit every day with him. Its been about 3 years maybe more.. And the sitting is mind numbing for me. He is good as gold because he feels great. He is clean all day. So after the first year of saying novena, then rosary, then daily church, I started an involvement with a great group of people who also attend Ohio. This lead to a wonderful friendship and I started writing this page. Its mainly my life with a differently abled child. But I add some old memories with it. Sam has affected our lives in many ways. He is a love bug but he is also the banner child for stubborn. And lately he has been dressing in all of our clothes that some nights he looks like the Micheline tire man.He sometimes has 16 shirts on at once. And, he pulls them down so his closet looks like a hanger cemetery. But it beats when he went thru the washing period. I would find wet clothes put away, or dirty ones. Or you would go on a treasure hunt to find your underwear. I am telling you the kid has style. A friend of mine did his hair everyday and now he wont go anywhere unless I put spray on his head. So my page is part humor, part memory and my reality. Because God blessed me with the trust that I can help keep him alive. Its a frightening responsibility but one I love. And I dont care how many hangers are broken, or if Sam is wearing my pajamas at home. My son is alive and happy. And it took a lot of you to help me get to this point. And I am so thankful for your help. So I hope you enjoy the stories, the tales of my life. And I hope you feel comfortable responding to them. FTBF
Posted on: Wed, 26 Mar 2014 02:21:42 +0000
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