Sunday, October 01, 2006

When Jason and I were in Japan last year in September, we were touring a town with our contact where there were many temples. We didn't go into any temples but walked around them and were looking at the beautiful architecture. One striking feature of each of the temples was a large bell hanging above the entrance, attached to a long rope that hung down for worshipers to reach. I asked our friend what the bell was for and he said it was to wake the god so the person could pray...I told him I thought that was very sad because the God that I pray to never sleeps and never slumbers. Thank GOD! Imagine if He was snoozing while people all over earth were dialing in... (Psalm 121:3&4)

Noah experienced his first healing! His face was really red, irritated and had TONS of bumps all over it for weeks(anyone who saw it can testify). He had it even yesterday afternoon. Well, last night when I went to spoon him in his crib his face was perfectly clear! (We have pictures!) I called Emily over to look at her skin and her eczema looked better than it had in months! The day before her skin was red and raw! Praise God! (Today when the nurse and I cleaned Noah's trach and changed the ties, she was holding his face with synthetic vinyl polymer gloves, his face reacted and turned red again!)

Noah is on antibiotics again because he has a staph infection around his trach tube. He spiked a few fevers but they have gone down now. We'll have another change in docs tomorrow as it's the first of a new month. His attending will be Dr. Diederding, of whom we have heard great things. Hopefully she will collaborate with us as we continue to do our research and testing. Hey, novel idea, perhaps the hospital will keep doing more tests since they've ruled out a lot of genetic disorders, why not the simple things like viruses?! We'd obviously sell our house to cover any costs, but the fact that they won't bill our insurance for the tests we want run but will charge our insurance $6.95 for a half size box of tissue that contains 40 of the nurses said,"Your insurance pays for the care for four other patients. We don't practice socialized medicine in America, but we really do." Interesting. Anyway, please pray that we would be able to get the tests out that we need done without red tape.

I miss our PICU nurses, though the ones up here are great, too. Change always takes time. We're actually moving today to a room closer to the nurses station since Noah is on a vent. I don't know the room number so when you call the regular number, just ask for Noah's room.

Last week was a great week for me. I fasted for the first time in years. It felt wonderful and I got to read the Word a lot and spend time being still. It's not often once you become a mom that you can actually do that, so again, I thank God for this time to do that.

Last night Jason and I got "off campus" together to join some dear friends for dinner downtown. My big sister hung out with Noah while Em had time with her Nana at home. It was good to be with friends and to enjoy some delicious Cuban food.

Here's a picture of Noah getting a little help from his monkey to prop up his legs while he sleeps. I couldn't resist! Have a great Sunday! Posted by Picasa


  1. Anonymous2:39 PM

    Dear Adrienne,Jason, Emily and Noah,

    I cannot begin to know what you all are going through. I only know that I love you all very, very much and I know that God will show the doctors what Noah's challenges are and you can all go home as a family one day. I miss you all terribly and pray for you everyday and night. Noah is such a cute little guy and always looks so peaceful in his pictures. Don't get too discouraged about the things that go on in the hospital (tests, drugs, charges,logic(?)), it goes on in all hospitals. My friend was married to a doctor and she even says some of them are not the perfect, caring people like we would like them to be. I know that Noah is in God's hands and could not be in a better place. I send you all my love, prayers and kisses,

    Love & Kisses,
    Aunt Diane and Uncle Tag XOXOXOXOXO

  2. Anonymous8:22 PM

    Adrienne and Jason-
    Just want you guys to know I continue to think and pray for God's strength in all of this. I had a little girl that is now 3 months old, and so often, when I look at her, I think of Noah and pray for him. Children are such a gift and he seems so special and sweet.

    Jenn (Powell) Dilger

  3. Forgive me for being a complete stranger, oblivious to the totality of your situation, but I feel compelled to say this, on the off chance it's been missed. Feel free to ignore me if I'm beating a dead horse ;)

    Are Noah's doctors aware that you and your husband were in Japan last year?

    I found your blog through a friend I know online ( My little boy Nicky spent 5 mos of his first year in the hospital last year, so I know all about 'hospital living' (we were there from 4/4-7/7 and 11/8-1/14 - over Thanksgiving and Christmas and New Years). If you're interested, you can find his blog at

    Best wishes, Erica