Wednesday, July 15, 2009

NEED SLEEP......

Well Friday - Sunday were amazingly horrible. Haven's sleep walking has been extremely INSANE! We've never seen her like this. It lasts all night. One night she was trying to run away pointing at the ceiling telling me some guy was trying to hit her with a hammer. I have no idea where that came from but I had work on her for a while to get her to calm down. Then I'm changing completely full diapers at least 4 times in the night. I think I had 5 coffees on Monday before I even knew what was going on.


Then Monday and Tuesday she has slept beautifully! Slept all night - no noises - no yelling. We even made it 4 hours without an accident in the diaper and made it to the potty each time! Super excited about that.



Here is my baby girl. She refuses to look at the camera right now. She is wearing her new gown from Emmy. It has monkeys all over it - her favorite gown.

Haven is doing well with everything so far that has been done to her or happened to her. There is only one area she has issues with and that's mom and dad constantly want to rub her head or kiss her head. She doesn't want anyone touching her hair or kissing her head. She is very protective of her baby hairs and doesn't want anymore to come out. So we try as hard as we can but we just want to kiss her little head so much. We keep making sure she knows how beautiful she is and how much we love her. She asked me tonight if her scars were beautiful. Of course they are. So we discussed each of her scars from surgery. She likes me to check them all and make sure they are ok. Then she is happy.

We hope to get some smiles out of her soon!

Love to all

M

2 comments:

  1. Sometimes after chemo, hair grows back differently than before. I wonder if she'll end up blonde! :) (This happened to a family member, it's so odd! My mom's hair also changed after she had kids...)

    ReplyDelete
  2. When Haven started chemo in April 2008 her hair was white blonde and stick straight. Slowly over 6 months it turned a dark brown. Then we started Cyclosporin and after on that for 5 months her hair was so thick and curly (it actually grows hair). Now with this high intensity chemo she has lost it. I can only guess what it will become next! :) Thanks for sharing!!!

    ReplyDelete

ROHHAD in Ireland

 I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...