Saturday, October 10, 2009

Miserable girl

What a night and what a day! Definitely not the restful weekend I was hoping for. Reagan was up at 4am but she wasn't her usual perky self. She was very moany and groany. It was two hours of this before she finally settled down and was able to fall back asleep. Unfortunately it didn't last long. She woke up for good at 7:30am. And it was clear that something was just not right with her. She's been this way the entire day. Moaning and crying off and on all day long. It could be one of many things, and we have no way of pinpointing which. She didn't get much sleep last night, so maybe she's just over tired. Every time she would fall asleep today it was extremely short lived, usually waking back up only minutes later with a seizure. It was heartbreaking. She was so extremely tired, but she just couldn't stay asleep. Maybe the Banzel increase is causing this strange behavior. It does seem like the Banzel has had more of an awakening effect on her, especially considering most seizure meds do exactly the opposite. She also seems to be having way more seizures in her sleep. Mike thinks that she's just not getting to a deep enough sleep and that's why she's still getting hit by seizures. Who knows. Maybe she's getting sick. We have no way of knowing if she's experiencing aches and pains. She's still teething (with the occasional low grade fever), so maybe her gums are hurting. She's also been 5 days without a bowel movement, that could be causing problems as well. Who knows, it could be any one of these or a combination of them all. No clue. All I know is that I'm dreading tonight. I hate to say it, but I have little hope that she's going to sleep tonight. I hope I'm wrong. We all really need some sleep. Please say a few extra prayers for this little one!

So sad...just not herself today.

This one is from last night, before she started feeling crummy. I really like the chest straps on this special tomato sitter...way more supportive than the tumble forms chair.


Heather said...

Poor love.I know she was sad but there is something very sweet about that picture of her on Mike's chest.You know,I think it is one of the MOST difficult things about having a child who is unable to communicate with you and that is trying to figure out what is wrong.Especially when you know there IS something wrong.We have spent the last few days ourselves trying to blame fussiness on teeth and tummy and lack of sleep, when in actuality, we have NO idea what,if anything,IT is.Frustrating AND scary.Hope sleep found you all.

Sinead said...

Did you ask your doctor about melatonin? It might help with the sleep. It's possibly the banzel and if so it should get easier when she gets used to it. Also one of our therapists said sleep cycle changes can coincide with developmental bursts.

Jackson's Blog said...

Well...I hate to read that she had such an off day yesterday! I feel for all of you! Reagan does look super sweet laying on her daddy...I love the look in her eyes. Her new chair looks neat too! I hope today is a much better day and praying for relief for Reagan.

blogzilly said...

I don't know how you do it. I can't remember a time in your blog when you DID have good, regular sleep. I'd have gone crazy by now. Well, I'm crazy even WITH a full 7 hours. So were I in your shoes I'd have to be put someplace.

JenniferLynnChupp said...


i am pregnant with my second child and we find out next week whether we are having a boy or girl. we already have a boy name picked out but haven't agreed yet on a name for a girl. as a result, i have been putting together combinations of names for the past few weeks, searching for the perfect name for a little girl. i finally landed on "reagan leigh" and decided it was the perfect name (reagan because i've always loved the name and because it is the last name of the greatest president of all time and leigh after my cousin and best friend, a missionary, who tragically passed away last year at the age of 22). i decided to google "reagan leigh" and see what came up and it led me to your blog. i read just this first one and your story on the side and was so instantly moved that i wanted to write you and tell you that i may not know you, and you may not know me, but that i am praying for your sweet little girl and your family. i admire your strength through your struggle and journey and pray for peace for you all!

jennifer chupp