mom2beagain
mom and preggers
- Joined
- Nov 9, 2011
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Hi everyone. I am expecting bean number 2 in early June, and was mainly on here on the pregnancy forums. I found the special needs support and about cried. Oh, how good it feels to be home. My DS, 8, has a chronic illness known as Reflex Neurovascular Dystrophy. He just got out of a 6 month rehab program at a hospital called The Childrens Institute who specialize in special needs. It feels strange to not have PT, OT, or counseling every night of the week. I am wondering how we are going to adjust. He will be home for the next year, with a two week stay at the hospital in December for inpatient intense therapy sessions, and then he will go back on a 6 month program.
Gavin, DS, is such a wonderful child. A few years ago when he was screaming because he hurt so bad, I nearly lost my mind. We went through treatments, testing, surgery, medications, hospitalizations, and finally a diagnosis. Although having the diagnosis didn't make it any easier. Sure we knew what we were after, but having 5 doctors tell you that your child is going to be in extreme severe pain for the rest of his life is never anything that you want to hear. He has to wear compression bands on his wrists and ankles to keep the swelling down. And he takes a ton of meds. Maxing out with two doses of Naproxen, three Levsin tablets, 1 Prevacid, 1 Concerta, 1 Clondine, 3 Bentyl, and 1 Melatonin every single day.
He gets picked on in school a lot, he is in third grade, and even last year when he was in the hospital for half the year, finished out with straight A's. He amazes me every single day! I hope that I can hear some inspiring, sad, struggling, stories here. Its nice to be around other parents who know how it feels. I always say the worst pain in the world, wasn't having my two M/C, it is watching my son suffer every single day. Trick or Treat was out for him this year, his legs hurt him so much, he went for about half an hour.
God bless and good luck everyone!
Gavin, DS, is such a wonderful child. A few years ago when he was screaming because he hurt so bad, I nearly lost my mind. We went through treatments, testing, surgery, medications, hospitalizations, and finally a diagnosis. Although having the diagnosis didn't make it any easier. Sure we knew what we were after, but having 5 doctors tell you that your child is going to be in extreme severe pain for the rest of his life is never anything that you want to hear. He has to wear compression bands on his wrists and ankles to keep the swelling down. And he takes a ton of meds. Maxing out with two doses of Naproxen, three Levsin tablets, 1 Prevacid, 1 Concerta, 1 Clondine, 3 Bentyl, and 1 Melatonin every single day.
He gets picked on in school a lot, he is in third grade, and even last year when he was in the hospital for half the year, finished out with straight A's. He amazes me every single day! I hope that I can hear some inspiring, sad, struggling, stories here. Its nice to be around other parents who know how it feels. I always say the worst pain in the world, wasn't having my two M/C, it is watching my son suffer every single day. Trick or Treat was out for him this year, his legs hurt him so much, he went for about half an hour.
God bless and good luck everyone!
Welcome to special needs forum, xx
