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...
Adrienne,
ReplyDeleteA 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.
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.
ReplyDeletei 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
ReplyDeleteA 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...
ReplyDeleteYou are an inspiration and an amazing woman. We continue to pray for you, Jason and Noah each and everyday!
ReplyDeleteI 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!
Adrienne,
ReplyDeleteLynette 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
Adrienne, I've been reading your site from the Hasz's site, and I've been praying for you all and Noah!
ReplyDeleteAfter 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.
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!
ReplyDeleteJODI, LITTLETON, CO
Adrienne -
ReplyDeleteIt 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
Adrienne,
ReplyDeleteI 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
Adrienne and Jason,
ReplyDeleteWe 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
Hello Adrienne,
ReplyDeleteI 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.
Adrienne,
ReplyDeleteI 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
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.
ReplyDeleteAdrienne,
ReplyDeleteKnow 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.
Adrienne,
ReplyDeleteWords 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
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.
ReplyDelete2 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
Adrienne and Family,
ReplyDeleteThank 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
Beautiful Friend,
ReplyDeleteI'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
Adrienne,
ReplyDeleteI 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
Adrienne and Jason-
ReplyDeleteSo 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
Adrienne,
ReplyDeleteI 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
Graves' family,
ReplyDeleteWe 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
Jason & Ade,
ReplyDeleteYour 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
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.
ReplyDeletei 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!
ReplyDeleteHi, 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.
ReplyDeleteBe blessed!
-Tammy
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!
ReplyDeleteAngie Arnold-Umfleet
Scott City, MO
Adrienne,
ReplyDeleteI 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
Hi Ade!
ReplyDeleteI'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
I already tried to post, so you may get this twice.
ReplyDeleteFew words but a long distance hug from LA.
I love you guys.
Chris K.
Jay, Ade, Em & Noah,
ReplyDeleteI'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