Friday, July 9, 2010


It's been a rough 24hrs. Needless to say, the clonidine didn't help last night. Reagan cried the entire night. The chorea is out of control. She's clawing at her arms, scratching her face, pulling her hair. I had to lay in bed with her and hold her arms down just so she could get a few winks of sleep. It was an exhausting night and the day hasn't been any better. We had about 15min of quiet this morning before the crying picked back up. It's amazing the endurance this girl has...she can literally cry for days! She's been inconsolable all day. She's been crying so much she's hoarse. We tried Ativan this morning to try to calm her down, but it didn't seem to do anything. We tried tylenol and motrin, nothing. We took her in to the pediatrician and she does have an ear infection in her left ear. How she can get an ear infection while on constant antibiotics is beyond me. So now we're switching over to a different antibiotic Suprax...hopefully that will do the trick...soon. I'm not sure how much more we can take. It's so hard to watch her suffer like this. We feel completely helpless. NOTHING we do seems to help. I just hope that somehow, someway she's able to get some sleep tonight. I know she's beyond tired. Problem is, IF she falls asleep (and that's a big if), she's so hypersensitive she wakes up the second you try to move her. Please say some extra prayers for our sick girl tonight...she really needs them.


ANewKindOfPerfect said...

I am so sorry to hear this. :( You know, we started giving my Peanut chloral hydrate at night a long time ago. She can NOT fall asleep on her own, her brain does not make sleep spindles. We also can give it if she cries inconsolably like you are describing. When she starts pulling her hair, scratching herself, causing bodily harm ... then it's time to give her something to help her calm down. Ativan doesn't work well on my Peanut, as you said with Reagan.

They are very similar little girls!

Debbie said...

Gosh-i am sorry all of you are going through seems endless, and peace does not last too have much strength to endure it day after have my prayers, and I pray you are resting tonight!

(My word verification...rests ;) )

Heather said...

Oh my friend.Not the update I wanted to find tonight.And me, thousands of miles away and not one bit of good.Hoping your mom was MAYBE there but something tells me,no.

I have been on the other end of the phone,with you,while Reagan is one of her daily crying cycles and I do not know how you do.I seriously don't.But,like we have said countless time before.What choice do we have?We do what we do because it's what we are called to do.If only the deep love you have for your beautiful girl could make it all better.What I wouldn't give to be there to give you a break,some relief and just sit with you.

And then there is Reagan.That child is the strongest little girl I have ever,ever known.So unfair.We have been praying for that break for her and once seizures were knocked out,we though our prayers had been answered and they have in many ways.But now we must kick up our prayer requests.Big time.

I'll call in the morning.Love to you all.Wishing as always that that love was enough.