a few more days off.

Gracie was so excited that her hair is long enough to hold a bow! it is growing in wavy again so she is happy that it will have curls again. its kinda hard to tame at this length but we will take what we can get! :)

we spent the night at a hotel while Brandon was working and Gracie and Von just sat on the side and put their feet in. they were happy with that and of course so was I. especially since I forgot my swimsuit and didnt want Von to go in. :)

Sweet girl.

Gracie got a wrap thing to keep her cords out of her diaper area. but it is so itchy with her itchy skin. it was a nice idea anyway, lol. we have just been taping the cords up out of the way and it works well.

Gracie is still in a lot of pain a lot of the time. She also eats little to none. She still weighs 27 lbs and we pray she will eat and gain some weight. all we have is the milk feeds at night and boluses in the day. i would like to keep it running continuously all day but baby brother messes with the cords and we dont want him tugging on her button, that has already happened once and it was very painful and scared her alot ( and me)

Today i took the two little ones to walmart and I had a pillow for Gracie to sit on in the cart, when it came time to pay she had to get off the pillow so they could scan it. she started whining cause her bum is so bony and the cashier said " oh you are gonna start crying now? it must be naptime" I said, "no its called chronic pain." some people should just keep their mouths shut.
anyway, tomorrow we go down for clinic and then back home til Sunday when she will be admitted for course 3 of antibodies. We are having another special day of fasting and prayer on Sunday for Gracie. if you would like to join us. We pray her pain will get better and her appetite and weight will increase. thank you!! xoxo