A few pictures

Sunday night "time stopping" moment we went for a walk....all 4 of us and Gracie and Tyson both did amazing.  Tyson layed and slept in the stroller (that's amazing) and Gracie sat in the stroller for the first half and was quietly carried by Todd the last half.  We actually got to "talk" to each other for a little while without screaming kids and it felt Great to get outside especially after having to shave her head that morning. 

Poor thing is SOO tired all the time.  We go into her room to try to lay down she stays for a little while then can't fall asleep and we come back out...over and over again all day.  In between the 2 packs of american cheese we went through in 2 days and more than 10 tortillas and lots of noodles and milk.  Her poop is pretty much white/tan now due to her fantastic diet.  Poor thing nothing tastes good and what she craves (salty) makes her mouth sores hurt.

She spends a lot of time in her super cute jammies now.  If I was going to feel that crappy I'd want to be in my jammies and watch lots of movies...so that's what we do.  Plus she's getting the steroid belly again which i'm sure will start wearing off soon now that she's done with steroids.  This is one of her piles...my heart feels happy when she has enough energy to make a pile.  It's her thing and I LOVE it.  I actually never pick it up cause I don't have the heart to.  Todd does sometimes but for some reason I just can't do it.  It's a sign to me that she felt good enough to make a pile instead of just laying on her bed/couch watching a movie and eating. 

Some of the important items she carefully places in her pile.  My word she is so sweet I just can't describe it.  I just love watching her do anything she enjoys.  And when she falls asleep it's like the worlds strongest magnet is pulling me to her.  I just want to lay next to her and hold and comfort her (although i try to resist b/c it would usually wake her up and she hasn't wanted to cuddled during steroids much at least by me).  THe only thing I don't like watchign is her suffer but I can't stand to not be there because I always want to be there to try to make it better.

Our sweet boy that deals with her steroid induced pushing away his legs while I feed him and she's constantly pointing to his swing when I hold him.  Although he does give out a pretty good scream on occasion while she does or while I'm trying to do somethign for her like feed/diaper change/bath and such.  He is SOO strong and alert for his age.  We love him.  Can't wait til things calm down and we can enjoy him more and give him the attention he deserves.

Here she is right now.  She's fallen asleep in the family room twice today.  Tried over and over again in her bed but never could and finally just wiped out while watching movies.