Home

Being home is actually kind of hard. We are both (F and I) adjusting to it slowly. We got home last night and all the relaxation of the mini-vacation we took to the beack after leaving the hospital was gone. Something about PTSD and worrying aobut rushing back to the hospital. I wonder if we will ever be able to relax at home again. We are just now beginning to process all we have been through the past month. Sam seems good and happy to move on. There are some terrible two tantrums going on, which are no fun, but I guess it is good that she is experiencing that. So we have some parenting to do, but she seems herself and ready to go.

It is really hard to sit in a hospital and look at your little one so helpless and sad. It is much harder doing this with a 2 year old who understands a lot more than it was with a newborn who didn't know any better. It was heart breaking. But, she wil not remember this. Only we will.

On a happy note, she got to enjoy the beach for her first time. SHe was tired most of the time we spend on the beach, but she did get a kick out of the sand, and did like putting her feetin in the water and let the waves come up over her ankles. She wasn't sure at first, but then asked for more and was laughing about it. To see that joy and wonder in her eyes makes all the rest worth it. I am so glad, and amazed, that she can still have such joy and wonder in the world. Unfortunately, we didn't have our camera with us, since we weren't planning on vacation, merely hospital time.

Her hair is growing back, but people still give you the loko when they see her heard. I don't blame them, but it is hard to see it. We try to keep a hat on, but she doesn't much care for that.

THe constipation is no fun. Thankfully we have her on Miralax now, insted of the other meds. It makes her poop multiple times a day, but she seems much more comfortable than she did on the senna which seemed to make her go 1-2x/day but really big ones that were really uncomfortable. Sorry for the TMI, but it is what it is.

She is drinking more, eating more, which is all good. She is sleeping better. NEed to get her back on her schedule now, though. And she is wanting to stand up more now, and sit up more, so she getting her strength back. Finally. We have missed our little girl, and it looks like we finally get her back. I hope we can enjoy part of the summer anyway.

I can't thank you all enough for all your help. It has been so invaluable to have your support.

Now, let's have some fun!