Thursday, April 22, 2010

Worse case scenario

Reagan could not fall asleep last night. She just laid in bed doing the nonstop movements. I kept waking up and looking at the monitor, only to see her moving, moving, moving. Finally around 4am I put her in bed with us where Mike cuddled her and she finally settled down. But every 3 min or so she'd wake up suddenly, breathing hard and moving around like crazy. Then she'd settle down and go back to sleep. This happened for at least 30+min til she was out for good. She slept til 10:15am and seemed to be in a good mood when she woke. And although happy, the whole day she's continued to be tense. Lots of moving, kicking, etc... Then we gave her a bath this afternoon and as I picked her up from the water, she threw her arms out, taking a deep breath in. Like a "startle". I didn't like the look of that. Then I saw her do it again an hour or so later as she played with her toys. Then around 5pm or so I saw her do it again. And again. And again. By the time we left for Bible study she was doing it every couple minutes or so. On our way back from Bible study she was doing it every 20 seconds or so. She was doing it so often I had the diastat out and ready to go. It looks very similar to what she was doing in the hospital when we blew on her. She'd inhale and throw her arms out. The EEG showed it was nothing, but that was always in response to something. This is not. And unfortunately, it's also very much what an infantile spasm looks like. I pray it's not. Pray, pray, pray. I knew it was unlikely for Reagan to remain seizure free for the rest of her life, but at the same time I thought I could handle it, as long as we were free of infantile spasms. I can't take it. I can't take infantile spasms again. I really can't stand watching my child have nonstop seizures, all day long, every day...AGAIN. I just can't take it. So pray that that's not it. That it passes and that it's not seizure related but maybe something along the lines of chorea. I've already left a message for the epileptologist's nurse and hopefully we can get her in for that 23hr EEG ASAP. Lots of prayers needed.

7 comments:

Anonymous said...

Lots of prayers for Reagan!! So sorry to hear she is having such a hard time, it just breaks my heart for all of you. It is so true that when our kids are doing good then so are we. Just know you are surrounded by prayer. Reagan so deserves a break and needs to feel better. Hang in there, and stay faithful. We will be praying for all of you.
Jamie
Chandler,AZ

Heather said...

Sending love and prayers and we'll talk again tomorrow.Hope you all sleep and that tomorrow brings NOTHING that resembles seizures.

Susan Hart said...

Praying for Reagan and for you and Mike! So hard as a parent to watch and be helpless when all you want is the best for your child. Praying that our ever-loving Father, who loves Reagan more than we can fathom, will heal her and give you strength and peace.

blogzilly said...

I am so sorry to hear about this, but hope it can somehow sort itself out for the best. I am always at a loss for words, but I will be thinking about Reagan a lot today. And you, too.

Lacey said...

That does sound like what Jax used to do, and he did have infantile spasms along with his many othere seizures. Praying its nothing!

Irma said...

Will be praying for all of you.

Anonymous said...

I check in on ya'll most everyday...I've been praying and concerned for Reagan for months. I was hoping for a "all is well" post....keep the faith.

Jenefer
(San Jose)