Sleep..... We have conquired sleep.. Joshua has always had clonus and then positioning is a on-goin nightly issue. Medication has not worked. Seemed to do the opposite effect. We sleep in shifts since I work my husband does night shift. Let me explain. We usually are up to 9-10 and Joshua gets sleeply and takes a while to unwind. Start turning and postion and rubbing down. He goes to sleep some nights good other nights talkin to himself. Then up between2-3 hours all night being turned. This could be due to spinal fusion and baclofen pump surgeries have made positioning difficult. Then the cramping or him saying i am sore laying one way or another. So sleep you learn to take in segments and take naps. Which he doesnt no. But its ok its our life and we accept and if we ever get a night without any hollering to come turn me we get scared... Just another day in the life of Joshua that we love.

Clara, I thinks it's funny that you say "Now we get atleast 6 hours of sleep a night"! I think parents with children who don't sleep take what they can get. If I told my friends (which I have before) that I got six hours of sleep last night, they would say "Oh, you've got to be tired!" Ha That's like getting 12 hours of sleep for other people! Our son has difficulty sleeping because of GI issues, I believe. He can't tell us so I'm not for certain that is the problem but for 2 years I got 3-4 hours of sleep per night, sometimes not even that much, and worked 50 hours per week too. It about killed me. I eventually had to get a home health agency to hire a nurse to sit with him at night. I feel guilty because I have a nurse there with him during the day while I work, I have a few hours with him to myself, and then I have a nurse to stay with him at night. I feel like I'm not spending enough time with him but the up-all-nighters had to go!

My son is 3 and has infantile spasms. He has good nights and bad nights. He also has some other health problems. Its like he cant sit still in his sleep. If he is being held and doesnt have any room to move around he sleeps better but if he has room to move its hard for him to sleep. He has had problems his whole life. when he was a baby he didnt sleep in his crib until he was almost a year. He had to sleep in the swing in order to get him to sleep or even to get him to stop crying. I would sleep right by the swing on the couch. Does anyone know what I should do? I keep asking his nero and they keep saying well sometimes there is nothing that can be done. So you are telling me that you let a 3 year old run on little to no sleep and no nap during the day. Please help. You can email me chris22j25@Yahoo.com in the subject if you put Hayden that way I know its not junk mail :o) Thanks everyone for your help