Thursday, April 8, 2010

Itchy nose or chorea?

Today has been a better day, thank God. No seriously...Thank you God!!! I don't think I could have taken one more second of crying!! It seems the Clonidine did the trick last night because Reagan slept from about 9:30pm til 6am. Whew, we needed that! And even better...she woke up laughing. I was ecstatic to say the least! Today she has definitely been in better spirits. Lots of laughing (although some is the crazy kind of laughing), lots of smiling, despite the throwing up and non-stop movements she's been doing. The throwing up is back again as well as the chorea. She can't sit still. She's moving, moving, moving. The chorea has been relentless today. She kept whacking her nose continuously with that left hand, her poor little nose was bright red this morning. I have had to restrain her all day. I either have to physically hold her arm down, put some sort of weighted blanket over it, or actually put arm restraints on it to keep her from wiping at her nose. I did decided to go ahead and try giving her the Zyrtec. I wanted to wait til we got the allergy tests back, but I just couldn't live with the idea that maybe it is just allergies that need to be treated (although I seriously think it's chorea and not at all allergy related). With all of the movements she's been doing there of course have been some that look a little too seizure-ish. Making me think that a 24-hr EEG might not be such a bad idea. I don't know. I guess we'll just wait and see. I'm definitely going to keep an eye on it, but I'm praying that it's nothing. Today Reagan did have 4 dirty diapers (way out of the ordinary for her) I'm thinking maybe she does have some sort of stomach virus. Mike called it (he thought all along that she was having severe tummy pains). I'm just hoping that she'll get better each day and that all of these crazy movements will fade away as well. Tonight we're trying the Clonidine again, but as of 11:30pm she still seems pretty restless. Tired but restless. I was a little hesitant to give it to her again, but that little body needs some rest and hopefully this will help her get it. Lots and lots of prayers still needed for this little one! First thing this morning I called the nursing company and they are coming out tomorrow to do the paperwork and may have someone working as early as Monday. What a relief! I just hope we can find someone who will be a good fit. Thankfully my mom flew in today so at least I have some help right now.

1 comment:

Wendi Taylor said...

Call me silly but... does it seem like her chorea-type movements start whenever she takes the clonidine? Just a thought I got from reading your blogs about her... but I'm sure you've thought of that already so I'm probably way off here.