ldunson

Hi, I'm a mother of an adopted son with CP. He was just three weeks old when we received him from the hospital. His parents were unable to take care of him so we took him in through foster care. He had tremors real bad and would scream at the top of his lungs, the only way I could make him happy was to wrap a receiving blanket around him tightly and snuggle him to me. I guess I was his safe place (still am). He was not expected to live pass 6 months, one year at the most. Once he turned a year old he was put up for adoption. Since we were the only parents he knew and we had fallen in love with him so much we decided he was ours to adopt. Our little boy is now ten years old and he is still our little baby. He cannot sit up or crawl, he talks with his eyes and has a beautiful smile ready for all, he is very sociable and a very adorable little boy. Through the years we have had his hamstrings and heelcords lenghtened, his tonsils out, a G-tube put in, a Baclofin Pump inserted, and his hip screwed up. The hip surgery caused his spine to curve and just this month we had to have the tube of his Baclofin Pump replaced. He was happy, smiling, and giggleling without a care in the world the morning of his surgery. When they gave him the "this will calm him for the I-V" medicine everything changed. He went through the surgery just fine and recovery was going well for about the first thirty minutes then.... He went into Baclofin withdrawals which was a nightmare. He stopped breathing and they had to push air in and out of his lungs, he threw up in the mask and got phneumonia from E-coli and the flu. They went down his nose and throat with a tube to suction out so he could breathe and drew blood. He was in intensive care for a week and on the regular floor for three days. Our son was so traumatized during his stay I didn't know his eyes could get so big. My husband and I have been wondering if we would ever see our little boy the way he used to be. He's been home now for two weeks screaming constantly, uncomfortable and sleeping at the most two hours at a time with his eyes not fully closed, we have to hold him to get that much sleep out of him. Yesterday we finally got a smile from him and today he was laughing and playing, (probably because we finally got a two week BM from him) Children with cp are prone to constipation and that can really make them fussy. I believe the worst surgery he had was the hip surgery. His hip would not stay in the socket, the doctor said if we didn't have the surgery now when he got older he would be in a lot of pain and would then be to late. He explained what he would do and how he would do it and I about cried my eyes out. My husband and I did go out of town for a second doctor to look at him and even talked to his neuro, he agreed also. Our son was walking in a gait trainer before the surgery and now not only can he not walk in one he is so disfigured it is heart breaking and while before the surgery he had no pain he now has pain with his hip. Doctors do a lot of good but they can not fix everything even though they are willing to try.
My advice would be to get a lot of therapy.. PT, OT, and speech. Learn EVERYTHING you can about EVERYTHING that has to do with your baby. You know your baby better than anyone. Make everyone involved listen to you and don't settle for anything less. You also need to get away from your baby from time to time to refresh yourself. We don't live near any of our families but our church family and friends have been a life saver. Above all love your baby and each other. Do the best you can and pray, pray, pray! It can be VERY rewarding raising a special needs child. Our child is not suppose to have a brain, only a brain stem. He is suppose to be blind, deaf, and non-responsive. I love it when the doctors call him "a puzzle" and "a mystery", our little boy goes by his own book, I pray yours will to and that everything works out for you all. I know this is long but I hope it helps. I wish I could help more. Happiness to you.