Liar, Liar



He is HUGE!

Dominic is making Mike and I out to be liars. While my mom was here to help with our "irritable" and cranky baby, he was an angel. He still didn't sleep much, but he was content if held or in front of the TV. She left yesterday and the rage began again. He was inconsolable most of the night and Mike and I had to take shifts and got about 4 hours of sleep each. We finally at 6:00 am turned on the dishwasher and sat him in his car seat in front of it and shut the door to the kitchen. Our dishwasher takes awhile to run, so he was quiet for awhile. I sort of feel like I'm neglecting him, but a woman's got to sleep and even his neurologist suggested investing in ear plugs, because there is nothing more you can do. He's fed (probably overfed) and dry and so totally exhausted. But steroids just make you feel like you want to peel yourself off the ceiling, they just whack you out....or so I've been told. So, I can't imagine what he's feeling, but for a 3 month old to only sleep a few out of the 24 hours in a day, he must be totally sleep-deprived. Fortunately, he has been okay today. Mike put him in front of the clothes dryer and that put him to sleep for about an hour and he hasn't been horribly cranky. Our friend Rachel came up to visit and the whole 2 1/2 hours she was here, he was silent! Just rocked happily in his swing. People must think we are making this up! I guess he just likes to save it for the middle of the night.



This kid loves TV

Hopefully we only have a couple more nights of this, as the plan is to reduce his dose of ACTH on Monday. Because he hasn't had a spasm since last Sunday, (still keeping fingers crossed!) they are going to start the weaning process. So, Monday - Wednesday he'll be on a lower does and then for 3 days at a time for the next two weeks after that, the doses will go lower and lower until they take him off it on Jan. 28. This is great news because we were originally told this treatment would be 6 weeks. Our neurologist has done a lot of research and has found that doing two injections per day (as opposed to one) for 4 weeks (instead of 6), the side effects are less severe and has better results. So, we are hoping and praying that he's right and that we don't seen any spasms return. Yesterday the doctor reduced his Vigabatrin from 1000 mg to 750 mg, so hopefully next week will be a better week with him being on lower doses of both. His blood pressure was high on Friday, which could contribute to the rough night we had last night. He also has diarrhea all the time, so hopefully that will get better too. If I were Dominic, I'd be pissed off all the time too.

Trying to rest

Mike and I are very encouraged by Dominic's progress and the fact that he hasn't had a spasm since last Sunday, but it feels like we're waiting for the other shoe to fall off. Just waiting for the day the spasms return. I feel like we are bracing ourselves for this nightmare to start all over again. If by chance Dominic continues to stay seizure-free, it will be a miracle. I believe in miracles, and I know they happen all the time, and this would be nothing short of a miracle. With the relapse rate we've seen, it will take a miracle. I know that our God is the Great Healer and that he has healed the sick, made the lame to walk and raised the dead. So, I know he can heal Dominic. But I also know that he doesn't heal everyone and he doesn't give everyone the miracle they ask for. But I am ever on my knees, praying my for my miracle.