If you'd like to help....

Kris and I are not the type of people to ask for help...we just don't do it. We are very stubborn and do things our way and just try to figure it all out along the way. Recently we have realized we can't do this by ourselves. We need the help and we have had so many people ask how they can help and what they can do. There are a few things we are learning as we go and anything is appreciated.

Some of the major things:

1. Diapers - WHEW! Haven can pee out 20lbs of fluid every 45 minutes now. They have her hooked up to fluids all day and she has to drink so much during the day. Her medication has turned her in to a faucet! I'm changing diapers every 30 mins to 45 mins. There is only one kind of diaper she can wear for her size so it makes it difficult. I'm using 2 packs a day now and they are about 15 dollars for 13 diapers. They are GoodNights 65-120lbs. Red package. I'm specific about them because they are the only ones that fit her.

2. CLEANING PRODUCTS - this is crazy. I have never cleaned so much in my life and I'm starting to feel like Cinderella but without the hopes of going to a disco and I don't have any birds and squirrels helping me. Carpet cleaners, furniture cleaner, dusting stuff, rags, towels...it doesn't matter....we're just going through it like nothing.

3. PURELL - we use so much hand sanitizer in this house we're rivaling Johns Hopkins. I almost shower in hand sanitizer now. I follow Haven around putting it all over her (yes I drive her crazy). But she knows now that you have to wash your hands or you can't touch your face and port stuff. We looked into getting the ones that you put on the wall, like the hospital, but the bags of sanitizer was so expensive we stuck with the hand pumps from WalMart.

4. CARDS - Haven loves to get cards from everyone. When she receives them her face just lights up and she is so excited and she hangs them up on the banister. Pictures of you are great too....we keep them with the cards because she likes to look at them and talk about them. So please - if anything for her - send cards addressed to her. If you need the address please email.

5. Gas cards - oh yea, we use gas like it's delivered to us from the oceans. Baltimore is just enough to drive you insane especially the closer you get to the hospital.

6. Grocery cards - this was great. I finally had energy to go buy groceries on Tuesday with my dad. I go in to the hospital on Wednesday and am told that 95% of the food I just bought Haven can't eat. NO SALT! What...I've never had to worry about that! So now I'm trying to find extremely low sodium, super low calorie, and even lower fat food. What the heck is that? So far, Tofu and no salt veggies and fruit. All of you know I DON'T COOK so I'm having to learn. Microwave dinners aren't going to work now!

I'm sure they're will be different crazy needs a long the way but these are what we are finding to be the hardest right now. We're loading up on trash cans, furniture covers (feel like I'm in the 70's with plastic on the couch), Lysol and anything else she may need.

The biggest thing for Haven is to know everyone is thinking about her and she really does love cards and pictures. She'll even drive me crazy to send some back to you.

Thank you to all - Love ya
M