Monday, July 19, 2010

Delayed updates!!!

Wow...I'm a slacker but I assure you I am extremely busy!!!! We've also just been enjoying living lately and Haven loves to have her foot and leg massages every night! Sometimes I'm massaging her for an hour at a time!

Thank you to everyone for continuing to send her gifts and cards. The above picture was from a girl scout troop and was filled with lots of goodies. Thank you Matt's Helpers Foundation for the gas cards, gifts to Haven, and her Target card. She bought quite a few craft projects with her gift card. Thank you to Casey Cares Foundation for the wonderful Dutch Wonderland passes - we plan to use them when the heat goes away! :)

Well, Miss Haven went to the dentist a few weeks ago and was given an A+ for her teefies. Even her adult molars are already in. However, we seem to be missing the entire front section of teeth! I believe the tooth fairy is now filing bankruptcy - we've lost 5 teeth and 4 were in the last 6 weeks.

Miss Haven is having a very good summer - much better than last year. We love our doctors, nurses, and hospital but it's so much better NOT to be locked up in isolation. We did forgot about an appointment in Oncology last week - she was to get her IVIG. So she is there today - I'm just waiting for news and to hear about her counts. We can tell her counts are low as she has had a couple infections. Seems the toes are coming back to haunt us again.

Miss Lauren has been hanging out with Haven most of July. She comes over 3 times a week. She is moving to Hawaii in August so Haven is getting as much time with her as possible.

Haven goes to cancer camp in 2 weeks. She has asked if she can spend the entire week there and not come home at night. This makes me very nervous but if she was going to stay over night with anyone besides mom and dad who better than her nurses and doctors and kids who are just like her. We are still deciding what we want to do. Not like we wouldn't go pick her up at 2am if we received a phone call.

Then shortly after that Haven will begin 1st grade. This will be a big change for her. We are going to have her go a full day - 8:30 until 3:45. No nap and minimal snacks....she may panic at first. But again we are less than a football field away from the school so it's easy to go grab her.

She has Endo and Pulmonary coming up before school starts and one more sleep study. I am fairly certain all will be good news. Since the chemo last year we have not reversed back to the bad side....everything just keeps getting better. It's a slow process but a good one. I'm very happy we took the chance and trusted our doctors....Haven is such a different child now.

Love to all - will update with anything from Oncology! OH we have lots of new ROHHAD friends out there in the world. I will be updating the Friends of Haven blog soon!


  1. Dear Misty,

    Thank you for the update. I'm so glad that Miss Haven is doing so well. It's such a blessing and inspiration to look back and see how far she has come since I began to follow her story. Giving God all honor and glory,

    Please tell Miss Haven that I said hello to her and that I'm sending her a big hug.

    ((((((((((((((BIG HUG FOR MISS HAVEN))))))))))))))

    Still keeping Miss Haven and family in prayer.

    With caring prayers,


  2. Mist; thank you for the information. I have not heard if a cancer camp what is it and where will it be?
    Havey looks very cute with missing front teeth. I know you have to remember your teeth leaving. I think there was a picture of my front teeth out; actuclly righr now one is broken and both have to be fixed and a lot of more work.
    I am at Gram's she was able to she Havey and read the info; hope you can visit with Haven it now we understand.