Joshie the tough guy

Well, he has been sleeping better with his new little cpap machine! Oh my gosh who knew how great it would be to go to bed at 11:30pm or even 12:00 midnight instead of 1:30 in the morning. Yes, our little routine would be to stay up until he could no longer stay awake and fall asleep at 1:30am. Now he has been sleeping by 11:30pm and some days even a little earlier. He also looks so peaceful now when he is sleeping. The only thing now keeping me from falling asleep soon after he does are his meds. He has a couple that are given at 12midnight and 1am. I try to stay up so I won't miss giving him the meds or I at least bump them up a little. However, it has been great knowing it is ok for me to fall asleep and not worry so much about his airway collapsing on him in the middle of the night. The way I sleep, I probably need a sleep study done on myself(ha ha)! I wake up for every little noise now because I am so use to listening out for him. His seizures unfortunately have not really improved. Actually it is always like clock work. He always seems to have them at 4 am and it wakes him up. I then calm him down and he falls back asleep. I hate it! He also gets them throughout the day. I want to start the ketogenic diet soon if this does not improve. We have tried almost all seizure medicines there are to try so far.

Joshua has been sick this week. His lungs have sounded a little wet. Secretions have increased again and he is struggling to clear them. I think he might have caught a cold. I have had to give him oxygen at night (or while sleeping). He also had a fever. I'm trying to keep him at home as much as possible and avoiding all the "sickness" going around right now.