Saturday, December 8th

Carla had another long day.  She had quite a few frustrating moments but also some really great moments throughout the day.  This morning she awoke at 5:00 a.m.  She sat up in bed and called me over to lay with her.  :)  She also talked to our nurse a little bit.  I let her watch a little Disney Jr. on the television this morning and after awhile Mickey Mouse Clubhouse came on and she started singing the words to the theme song and smiling.   It was like old times.  Around 9:00 she started to get pretty angry and frustrated (because she cannot communicate with us) and even bit her Dad! We figured out the problem was that she didn't like her hospital food and wanted something different.  I made her a Cup of Noodles (because she LOVES noodles) and she was back to her usual sweet self and apologized to her Dad for biting him.  We got her to walk around the room a little bit and she also looked out the window.  Her strength is amazing to me and I can't believe how well she can walk already!  One really big problem that we are having right now is the fact that she has had such bad poos for so long that her bum is an open wound!  And every time she has more diarrhea we have to clean her up again and she is just miserable!  The wound nurse suggested this butt cream that creates a thick barrier on the skin, but unfortunately, it keeps sticking to the diaper and ripping loose and exposing her raw skin every time we remove the diaper!  Oh she is just so miserable!

Bobby had to go back to work today and so I went home with him so that I could shave his head.  Apparently Carla got so angry about us leaving that she bit her Grandma not once, but two times!  Really bad.  We both wont be leaving her again... it is just too stressful for her...and not safe for Grandma!  I feel really bad about how badly she bit her Grandma...  After I got back from home, we took Carla for a wagon ride.  When we got back she ate dinner and then was  kind of bored.  I tried to get her to color, not interested; play with play dough, not interested; then I pulled out my phone and we rocked some "Call me Maybe" on the you tube.  I was sitting across from her in the bed, grabbed her arms and started moving them to the beat of the music.  Before I knew it, she was moving to the beat on her own and singing all the words!  We did it again, then we sang Taylor Swift's Mine, then Justin Beiber's Baby, Stephen Jerzak's White Horse, then the Beatles' Here Comes the Sun, Janelle's Amazing, The Beatles again, Once upon a Dream, and finally Amazing again... She sang every song all the way through and as she sang, all of her motions and expressions that she would normally make while singing that particular song, came back.  She had the facial expressions, arm movements, EVERYTHING down, just like before.  After we got done singing she was BEAT and fell asleep on her own.  So glad we found this outlet for her.  I think it will not only tap into that part of her brain that seems to be sleeping right now, but it will also give her an outlet to feel "normal" again.  Because, when she was singing, she was her old normal self.  Pretty Amazing.

I actually recorded her singing Amazing, but it is too long to e-mail from my phone.  So, I will see if I can put it on the computer and figure it out.  Also, now that I know she does this, I will be able to maybe get more video tomorrow.

Thank you for the continued prayers!

Love, Jen


Anonymous said...

I am a friend of Mindy's but try bag balm on her bottom. It seemed to work well with my children and isn't very hard to remove from her bottom.

Anonymous said...

Hi Jen my name is hayley and I'm Stephanie Briggs sister and have been following your story and keep you all on my prayers and I have to say bag balm also as this is all I use on my kids and it turns sore red honeys into normal hineys

Anonymous said...

The poo poo is being caused by the mag supplement most likely. If they put aquafore over the wound cream (nice and thick) then the wound cream will stay put and not peel with the diaper.