Wednesday, September 16, 2009

Giddy

The sleep issues continue. I don't know if it's the increased pm dose of Banzel or what but Reagan hasn't been sleeping worth a darn the last couple nights. Last night she woke up crying, we put her in our bed for a while where she tossed and turned, and finally at 5:45am I got up with her for good. The thing is, she's not sleeping much during the day either. Just a little nap or two, certainly not enough to make up for her being up all night! She's actually been quite wired today, especially tonight. When Mike got home she was squealing and talking up a storm to him. There's no doubt in my mind she was saying Dadee and Dada to him. No doubt. Giggling, squealing, and babbling...she went on like this for more than an hour. It was so funny! I had to break out the video camera to document it. It's not often that we see her this way. I'm not sure what it was, but she was down right giddy! It was really cracking us up! (See video below...make sure you pause the blog music.) I spoke to the neurology nurse today about the possibility that the Banzel is affecting her sleep and she mentioned that they really don't know a lot about this medication but they don't think that's one of the side effects. Their suggestion was to just lower the dose back down to 1/4 tab 2x a day to see if it helped. I think I'm going to wait one more night before trying that. Just to see if history repeats itself. If so, no worries, I'll lower it. I'm hoping maybe she'll just get used to it. We'll see. Reagan had physical therapy this morning (where we talked about another round Botox and serial casting), she had her blood drawn (for a test to look for mitochondrial DNA deletions and mutations in the blood), then she had her Feldenkrais lesson (and fell asleep toward the end, she was so relaxed). She's had a busy day and then a crazy hyperactive night, maybe she'll actually get some sleep tonight?!?!? Oh I hope so!

video

6 comments:

Heather said...

She is so darn cute.Giddy is the perfect word.Her hair is so long!I love the braid at swimming too and her darling suit.I am sorry she is giving you such a hard time in the sleep department,seeing she was doing so well for a bit.I know how much you all could use your sleep.I am most disappointed that there has been no improvement in seizures.I want for this med to work so badly.I continue to be amazed though,in how great she does despite it all.She remains happy and active and participating in the therapies and yes she remains ... giddy!!Love to you all.

kmccall said...

Nothing brings a smile to my face faster than the sounds of a happy baby! Love it!

Lacey said...

She is so sweet. She was definitely on one that night.

Anonymous said...

So precious. It is just so sweet to see and little girl and her daddy.

Liz said...

Absolutely precious video! She just looks so sweet and happy. For some reason, my Maddie is the same way.....we have had major sleep problems ever since her IS started, no matter what medicine she is on. And who knows why she is always super happy and playful in the middle of the night?

Thanks for sharing the video!

Sophie's Story by Elaine said...

I LOVED this video. It brought tears of joy. She looked so...as you perfectly described it...giddy.