Oh God this is the hardest thing I have had to do for Zack and we are now on the third night of basically following a bedtime routine whereby we put him in bed whilst he is still awake and leave him to fall asleep and settle himself on his own.
First night, we put him down at 7.30pm the crying and moaning went on until 5am, yes 5am! We went in every so often to pat him on his back, to reassure him we were still there but it was so hard not to pick him up and go back to the old thing of holding him and rocking him whilst he cries and then finally drops off. Dan kept reminding me that the only reason he is crying is he wants to get up, he doesn't want to go to sleep and he has learnt that us holding him means sleeping and going to sleep.
Night two was slightly easier. We did the same thing again. Remember routine and consistency is the key. (According to Dan, who now seems to be an expert on sleep). By about 9pm it had gone quieter. I went to the supermarket. I came back to Scarlett wanting food (nothing new there) which meant that her crying had woken Zack up. So back to square one with him moaning and crying. Eventually he went to sleep at about 11.30pm. Okay, a bit better than night one.
We are now on night three and he is moaning in bed. He is so tired he couldn't keep his eyes open downstairs. All I want to do is go in and pick him up but it would make no difference to his moaning he would still cry, in or out of bed. I feel awful but we have to carry on and break this dependancy on us for him to fall asleep.
We had the results back from Zack's latest EEG. Apparently the Hypsarrythmia has gone. He no longer has infantile spasms. What he now has is partial seizures that is they are in one part of the brain on the left side. I asked the epilepsy nurse if this was a good or bad thing, she said well we aren't going backwards and the medicine he is taking treats partial seizures. So for now I'll take this as a good thing. We see the neurologist in June so will hopefully get a better explanation then as I don't fully understand it myself.