Tuesday, September 12, 2006

Well, we had a meeting with the three main docs yesterday afternoon. The jist of the meeting was that there is nothing else they can do for Noah, except help him get over his pneumonia so that he's strong enough to have a tracheostomy and move up to the regular floor. The PICU Attending physician said that if there are other physicians, naturopaths or specialists that we know, they are MORE THAN WELCOME to come assess Noah without the hoops to jump through or red tape of regular circumstances. The visiting specialist would need to consult with the docs here in the PICU, but anyone is welcome to come read his charts...

The meeting was surreal, to say the least, but I wasn't discouraged for some reason, when in reality all they told us was that Noah is showing them that he is progressively getting worse and they don't know why and have no way of helping him.

I'm not mad at God anymore...I trust Him and know that Noah is in our lives for a purpose. This kid has "met" more people in more cities and countries around the world than he's ever visited! Even if you've never physically met Noah, I pray that his journey would continue to lead you closer to God and not further, that you would be encouraged in your faith and challenged in your walk of life to live with hope and live life to the full.

Until a little later today...

37 comments:

  1. Adrienne,
    A friend of mine shared your blog with me. (I had never even read a blog before!!) She also had a son in Denver's Children Hospital about six years ago. They saved his life. The doctors there are wonderful. Noah is in good hands.

    I own Pump It Up - the Inflatable Party Zone off I-70 and Kipling in Wheat Ridge. I would love for you to bring Em and her friends and family in when you can for a party - on me. Check out our site at www.pumpitupparty.com/denverwest.html
    We have two arenas filled with the biggest inflatables they make. You and Jason and Em will love it.
    Give me a call at any time and let me know when you want to come in and I will make it happen. 303-422-5225.

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  2. Anonymous10:51 AM

    My name is Veronica and I am a student of Tonya. I pray for your baby everyday and feel your pain. MY nephew was in the hospital since he was born,waiting a heart transplant. Seeing what the boys go through is very hard. I will continue to pray for your family.

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  3. Anonymous11:07 AM

    i am so sorry for the last meeting. i am stil praying for noah to get better. and i am happy that you are no longer mad at god,i belive that he heard you prays and crys, i belive that god has givin you the peace in knowing that he is there right next to noah and holding him. all our love and prays go out to you. The Pettee's

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  4. Anonymous11:13 AM

    A friend of Noah's grandma asked for prayers for Noah on a Weight Watcher's post this morning, and I read a little from your webpage. I was a clerk in a PICU for the last 6 years, until we moved away, and I have to reassure you that God will give you more strength than you ever dreamed, just continue to trust in Him. I have seen many parents face this sort of situation, and all have had miracles. For some, it is a miracle of physical healing, for some, a relief from pain, and for others it is joy for continued life, and growth, even with what some could consider serious handicaps, all children bring joy, if we trust, and look for it! God bless you, and know that you, your friends and family, and the PICU staff will remain in my prayers...

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  5. You are an inspiration and an amazing woman. We continue to pray for you, Jason and Noah each and everyday!

    I am listening to my 4 year old pray for baby Noah right now as Rich is putting them to bed.

    Much love to you all!

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  6. Anonymous11:35 AM

    Adrienne,
    Lynette in Tulsa again. I've just read your last post and am intrigued by the invitation to any doctor who is curious enough to read Noah's charts. Somehow over the years I have acquired one heck of a network system around the globe. Therefore, any time I hear of an opportunity to call upon my international connections, I am quick to jump on it.

    With that being said, could you provide either in a personal email (lynisfriend@yahoo.com) or another blog (I think the way this news of Noah has spread this might be a good option) as to what type of doctors you think would be best.

    For example, when I look at the doctor directory of the pediatric unit at the Mayo Clinic I get results such as:
    Medical Genetics
    Neonatalogy
    Nephrology
    Neurology
    Hematology and Oncology

    I'm not exactly sure what all of these mean, but would any of those work, or do you think one department would be better than another? I know the term "genetic metabolic" has been tossed around. So perhaps the Medical Genetics department would be best?

    Also, I think you already mentioned doctors from Mayo have looked at his case. Would it be too much to ask for a list of facilities have looked at his chart? Or is that too long of a list?

    I don't want to add more stress to your already-full plate. So, if I don't see something from you within 24 hours, I'll proceed to contact "my people" and give them what I can based on what I pull from your blog. I CAN'T PROMISE ANYTHING, but I'll give it a shot.

    I, and at least 150 people that I'm connected to (1-6 degrees of separation :-)), are continuing to hold your family up.

    Be.

    **Lynette

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  7. Adrienne, I've been reading your site from the Hasz's site, and I've been praying for you all and Noah!

    After reading this, I'm wondering if St. Jude Research Hospital might be an option for Noah? They deal with a lot of rare stuff and do provide consultations for the doctors there for Noah without him being a patient there. OR if he is accepted as a patient there, they'd work him up.

    The link is this:

    http://www.stjude.org/referringmds

    so you can see if you think this might be something that could help Noah. They'd kind of like the Mayo Clinic for kids in a way.

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  8. Anonymous1:52 PM

    ABOUT THE PUMP-IT-UP LADY THAT LEFT THE FIRST COMMENT - IT WAS A FRIEND OF MINE THAT FORWARDED MY EMAIL TO HER. JUST WANTED TO TELL YOU SHE IS A GREAT LADY, AND SHE IS SERIOUS. YOU GUYS WILL LOVE PUMP-IT-UP, SO TAKE HER UP ON THE OFFER!
    JODI, LITTLETON, CO

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  9. shanda barker3:55 PM

    Adrienne -
    It was such a blessing to meet you, Noah & the rest of your family the other evening.

    You guys continue to be in my prayers.

    Shanda

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  10. Anonymous4:46 PM

    Adrienne,

    I am in tears reading your blog. Please know that my heart is with you and baby Noah. You are an incredible woman. I am amazed at your honesty, strength, stamina and reliance on God. He is so near to Noah, you and Jason.

    Much love and many prayers coming your way...

    Mauri Brendle

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  11. Lucinda and Mark Sears4:46 PM

    Adrienne and Jason,
    We met Jason in July in Boston - part of the DriveWorks team. We just wanted to send our thoughts and prayers your way and hope with all our hearts that Noah finds the strength to recover. And we send our strength to you both, Em and Noah.
    Lucinda and Mark

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  12. Still praying and believing in you, Jason, Em and NOAH.
    Love Ya,
    Millie

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  13. Hello Adrienne,
    I visit your blog everyday to see how things are going. I pray for your situation and find myself doing what I can to bear your burden. We don't know each other but we have mutual friends. Maybe someday we will meet.

    Keep believing! That Noah is the sweetest. I love the picture of him and Jason. I wish I could scoop him up in my arms (meaning Noah of course--hee). Em is a beauty as well. (My husband and I have six kids). Blessings my friend! Keep us posted.

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  14. Anonymous7:01 PM

    Adrienne,
    I can not find words to say - but know that I am thinking and praying for your family all the time.
    You sister in Christ
    Jana

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  15. Anetha, San Diego7:11 PM

    I heard about Noah on the Weight Watchers website where a friend of Noah's grandmother posts. I have sat here and cried reading your posts and seeing the adorable pictures of your children and family. Your faith in God touches my heart. Considering what all of you are going through, my problems seem minor. You are right to trust God. We may not always understand why, but we can rest in His love for us. May He give you all what your heart's need, and may He give Noah comfort and rest.

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  16. Anonymous7:44 PM

    Adrienne,
    Know that there many who are standing with you. Please redirect that anger at the one who is responsible for this; not the Lord. God gave your mother that dream for a reason; so that you would not only know how to pray; but also KNOW that we have the victory no matter what it looks like in the natural. He gave her that dream to foil the plans of the enemy! God IS stronger than any enemy that comes against us. We will stand with you until we see the victory come. Let us redirect every ounce of our faith to the ONE who is able to deliver!
    Love to you all!
    Nancy O.

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  17. Anonymous7:48 PM

    Adrienne,
    Words are not coming to me very easily, but I couldn't not tell you how your story has touched me. I am a close friend of Dora's and she forwarded your blog to me. Tears have flowed as I went back to the beginning and read each of your entries. He is truly a beautiful little boy! I am blown away by your strength and my heart is heavy for you and your family. Noah couldn't be any luckier to have you and Jason as his parents. Take care of yourself and each other. You will continue to be in my thoughts and prayers.
    Lots of Love,
    Jamie Detter

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  18. DAVE PENDLEY8:44 PM

    Adrienne, I think the verse you mentioned is 1 Corinthians 10:13 No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it. Connie and I are praying for Noah. I want to pray Deuteronomy 28:1-13 over your family. If you fully obey the LORD your God and carefully follow all his commands I give you today, the LORD your God will set you high above all the nations on earth.
    2 All these blessings will come upon you and accompany you if you obey the LORD your God:
    3 You will be blessed in the city and blessed in the country.
    4 The fruit of your womb will be blessed, and the crops of your land and the young of your livestock--the calves of your herds and the lambs of your flocks.
    5 Your basket and your kneading trough will be blessed.
    6 You will be blessed when you come in and blessed when you go out.
    7 The LORD will grant that the enemies who rise up against you will be defeated before you. They will come at you from one direction but flee from you in seven.
    8 The LORD will send a blessing on your barns and on everything you put your hand to. The LORD your God will bless you in the land he is giving you.
    9 The LORD will establish you as his holy people, as he promised you on oath, if you keep the commands of the LORD your God and walk in his ways.
    10 Then all the peoples on earth will see that you are called by the name of the LORD, and they will fear you.
    11 The LORD will grant you abundant prosperity--in the fruit of your womb, the young of your livestock and the crops of your ground--in the land he swore to your forefathers to give you.
    12 The LORD will open the heavens, the storehouse of his bounty, to send rain on your land in season and to bless all the work of your hands. You will lend to many nations but will borrow from none.
    13 The LORD will make you the head, not the tail. If you pay attention to the commands of the LORD your God that I give you this day and carefully follow them, you will always be at the top, never at the bottom.

    I believed you are blessed by the Lord. Remember to never give up trusting The Lord. May He give you comfort and rest at this time. Dave

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  19. Adrienne,

    I can only say I love you. My heart breaks because of all that you, Jason, Noah and Em are going through. You are in my thoughts often and in our prayers daily. I pray The Lord will guide your steps. You are an amazing woman of God, an amazing family.

    Laura

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  20. Laura Tanberg9:03 PM

    Adrienne and Family,
    Thank you for sharing your heart with all of us- and for allowing us to support you in prayer! My students and I are keeping Noah lifted up and we will continue to support you from back here in Minnesota!
    All my love,
    Laura Tanberg

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  21. Anonymous9:57 PM

    Beautiful Friend,
    I'm sorry that Shaun and I missed you at the hospital Sunday.
    I know you know that I love you dearly. I'm thinking of you always and remembering you, Jason, Em and Noah before God. I'm so proud to have you as my friend. Thank you for showing each of us how to keep reality in our relationships with God. You're a hero. xoxx Stash

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  22. Anonymous10:03 PM

    Adrienne,
    I am a friend of Tonja's, Jill from Nebraska, and she sent me an email to tell me about Noah. I just wanted to send you my support and love. I, too, am a stay at home mom and know just how hard that job alone is. I can not fathom having all of this on top of that. It sounds like you are treasuring each moment with your son and family, which is all you can do or have to do at this time. God will guide you for anything else you need to do. I love your honesty at being mad a God, for what parent would not feel that in such trying times. God can handle any feelings we have, even anger, and yet never leave us. Noah's life, however long that may be, has and will continue to touch so many people everywhere, more than most who live to be 100. He must be a magnificent soul to start at such a young age! I am in AWE of your strength and will pray for all of you, especially Noah. God will open a door for you, his time is just different than ours. Peace to you, Jill

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  23. Adrienne and Jason-
    So good to be with you once again. We love you guys and Em so much. Your family is so beautiful and you are continually in our thoughts and prayers. Call anytime. Much love and prayer,
    Kim and Rock

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  24. Anonymous11:21 PM

    Adrienne,

    I just want you to know that we are praying so much for you guys. I cannot imagine what you are going through. I saw that someone else mentioned St. Jude's. That is where my nephew went when he had a brain tumor. He was getting a pretty bad prognosis from everyone else in terms of survival rates, and St. Jude's was using different protocols and treatments than all the other hospitals because they are a research hospital. Anyway...I just thought I'd let you know that they had a great experience there and the staff was awesome to work with. Please know that we are praying for you all and Noah every day.

    Love,
    Lisa and Greg Hughes

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  25. Jason and Adrienne-
    We heard about Noah through the grapevine and we are joining with you in believing for his COMPLETE healing. Our daughter had a resistent strain if staph in her lungs last year. The day after day of waiting and monitoring of symptoms was excruciating. Since then we definitely feel the burden for parents with sick children in the hospital. As Noah's parents you are standing up and battling for him. When you are weak or tired we will hold up your arms for you. We are passing your story along to all our friends and intercessors. Please know that we are with you and praying!
    Much love,
    Gyle and Kelly(Vallone)Smith

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  26. Hi Graves Family,

    I'm sitting here at work and "Beautiful Day" is playing on the radio as I type. As I know it's one of your favorite songs, I immediately thought of you guys and knew it was a prompting to check Noah's site and send a note! Oh, how my heart aches for you and this recent news. While I know each day is a gift from God, I'm praying for that "Beautiful Day" when you can hold "healed" little Noah in your arms. I'm praying that some doctor/specialist will be found that can answer all of these questions once and for all. Our God is so Big, So Strong and So Mighty, there's nothing our God can not do! (do you remember that Sunday School Song?) Please continue to cling to that truth. God's grace is also sufficient to give you the strength you need for each day! Praying that your spirits will continually be uplifted. We love you!

    Heather Rudolph

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  27. Anonymous10:12 AM

    Graves' family,
    We are praying for that doctor/specialist to be found that will have answers for Noah. Our God is a great God! God Bless you all!
    Robb Arnold family

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  28. Anonymous11:42 AM

    Jason & Ade,
    Your strength & courage, faith in God is amazing! Your honesty amidst all that is taking place is precious & real... all this has touched our hearts. Jon & I have been praying for you all! Believing in God's love, healing and purpose for lil' Noah Graves (he is a handsome one)! Love, Lisa Custer

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  29. Candace11:52 AM

    Hi this is Candace Sherer, you don't know me but i found out about this through a kiki carpenter a friend of your mom's and i just wanted to tell you i was really touched by everything that was said about you. I want u to know that i'm gonna be praying for god to heal you and i truely believe that he has enough power to do it! i've seen it happen before!!! U sound like an amazing boy and i can only tell you how awesome the father is to place such wonderful people in this world that want to follow after him. Know that there are many people around the world praying for you and lives are being touched. You are in God's hands and know that he loves you and will always be there for you.

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  30. Candace11:54 AM

    i actually wrote that to noah ...the last comment of mine! But adrienne, were praying for your boy and for your family! Your in good hands!

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  31. Anonymous12:46 PM

    Hi, my name is Tammy and I was an intern with Teen Mania. I know you do not know me but I just wanted to encourage you guys and let you know that I am praying for Noah and for your family. I cannot imagine what you are going through right now.

    Be blessed!
    -Tammy

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  32. Boo,
    my heart aches...I know that God can do anything...He listens to you and hears your doubts, fears, dreams, and hopes...hold on to this: He who began a good work in you will carry it on to completion...this has taken place so that the works of God can be displayed in your (and Noah's)life...He can carry this burden with you...and carry you when you just can't walk anymore...I love you, Boo

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  33. Anonymous1:20 PM

    What a beautiful baby. Looking at the pictures of the family is great. Now that I know what is going on you have the state of Missouri praying as well. God is a big God! Be encouraged! I love you and my tears join yours. As mothers there is no greater love than our family. You are such an amazing strong woman Ade, you always have been. Every since the days at ORU. Your excitement and stamina have never changed. Keep up the fight and know we are behind you. Noah is absolutely beautiful!

    Angie Arnold-Umfleet
    Scott City, MO

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  34. Anonymous2:03 PM

    Adrienne,
    I just want to say that I love you guys and I am praying for you and for precious Noah every day. I wish I could come to Denver and give you the biggest hug ever! I am hugging you from Houston!
    Kristy (Pruitt) Montgomery

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  35. Anonymous3:08 PM

    Hi Ade!
    I'm here at Ghost Ranch...painting away. I just tracked down a computer, and the first thing I checked was your blog.
    Be strong woman...you are the most amazing heart I know. I continue to talk to God about Noah and pray for all of you, I've shared your story here...the collective prayers just keep growing.
    Bring on the doctors!the healers! That group will grow too. There's an answer out there.

    I will see you soon,

    Steph

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  36. Anonymous7:01 PM

    I already tried to post, so you may get this twice.

    Few words but a long distance hug from LA.

    I love you guys.
    Chris K.

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  37. the Kennedy's11:30 PM

    Jay, Ade, Em & Noah,
    I'm not sure what to write... I'm not sure of the reference for the "God won't give us more than we can handle thing" but we know this: We laugh with those who laugh, weep with those who weep, and REJOICE with those who REJOICE! We love you, miss you, and are praying for little Noah. - Dave, Cindy, Lillian, Kaija, Eli & Ainsley

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