Do you think that when God created all the animals, He formed them out of warmed Tootsie Rolls? That would have been something to see, but I think the way He did it was probably WAY cooler…Anyway, here are the other two pictures that didn’t fit in the next post. I love this one of Em and Noah…she was SOOOO excited to get a little brother! She really is great with him!
Today’s care conference was nothing different than the others in that it is already established that there is nothing that the hospital or the Mayo, as we found out today, can do for Noah. We weren’t there to really discuss that, but boy, from the one doc, was it ever re-emphasized, to which I replied, “We aren’t ready to say goodbye to Noah, so I want to be assured that he’s still being treated equally as a human being. I want to know he’s still getting optimal care and that he isn’t being treated like a lump!” We said we wanted OT and PT to continue coming for therapies, to which the one doc said, “Usually there needs to be a goal for therapists to treat. I don’t know if the insurance company will pay for those therapies if he’s going to die and there is no ‘goal'”. I said, “Our insurance hasn’t had any problem paying the $1+million that has accrued thus far…the goals of OT and PT are stimulation, that shouldn’t be a problem.” The ironic part of the meeting, to me, was that the doc that I didn’t expect to come was the one that spoke the most and drilled it home again and again the tragedy of the situation. Apparently that person doesn’t realize we realize what we realize…the annoying part is that doc keeps saying, “The sad part is we aren’t good enough for Noah.” Yes, that is the sad part and that is the reality, but I told them that we still have hope and we still have faith, unfortunately we are stuck at the hospital while we wait…”Posted by Picasa



10 Responses

  1. I did not get to add to the Pompea disease that Duke University has a new drug being tested there with great results.

    Let me know if you want the article in the WSJ and I will send it to you. I continue to pray for Noah every morning.

    Bill James 720 276 2651

  2. We are right there with you believing for complete healing in Noah’s body. Praise God that he is the Great Physician! Noah is such a special little boy that I can’t help but believe has a lot of work left to do here on earth. I see him touching many more lives and doing wonderful work for the Almighty. We are praying and praying that you will get your miracle very soon so you no longer have to keep pleading your case.

  3. praying with you that the Lord will continue to be in your midst and be glorified through Noah’s life. may you continue to have the strength to endure and the grace to breathe in and out each day.

  4. Adrienne, I am going to pray for that doctor to be filled with hope and a desire to cure Noah. I rebuke the curse from his mouth that says Noah is going to die in the name of Jesus our heavenly Father.

  5. Ade,

    Every once in a while I look at my son Xavier and feel such guilt and tormoil as I know you (someone I love so much) cannot enjoy the smiles and giggles as I do. I haven’t found a way to reconcile this in my mind. How can this be?

    But one thing I know for sure, God has touched you. Your beauty and hope have outshined the darkness of your sadness. Your grace inspires me, your humanity humbles me and your faith baffles my mind. I love you so.


  6. Adrienne-
    I just talked to Kaija on the phone and I am praying feverently for you!!! I am praying that something in Noah’s brain will trigger a stimulation of some sort and will give not only you a new sense of hope but also the doctors. Keep your eyes on the Lord now more than ever and keep the faith. Don’t let the things of this world let you loose sight of GOD!!! Pray, and pray and pray some more! I am there praying with you!!! We love all of you and are praying for a might miracle!!!

  7. Hello there,
    My name is DeAnn, my daughter Rachel sent me little Noah’s blog spot, so that we would pray for his healing and strength for you all as well. I came across an interesting article on page 37A of the Rocky Mountain News, the December 12th paper. Perhaps you have already seen this, I don’t know, but if not check it out, you never know. The article is out of San Francisco, and took place in Portland, Oregon about a stem cell injection that was performed on a six year old little guy, with a rare genetic disorder, called Batten disease.
    Please know that we are truly praying for your little man Noah, and for you, his family.

  8. It must be so frustrating to have the doctors “give up” on Noah. I would be so angry. I’m thankful that you are able to remember that God is ultimately in control and that he has not given up on Noah or forgotten your family no matter what happens. Blessings on you.

  9. We said we wanted OT and PT to continue coming for therapies, to which the one doc said, “Usually there needs to be a goal for therapists to treat. I don’t know if the insurance company will pay for those therapies if he’s going to die and there is no ‘goal'”.

    This just makes me want to blow a gasket!!

    This reminds me of a time that seems like ages ago now, when Nicky was first born and was awaiting his first open-heart surgery. I used words like ‘when’ frequently, in regards to his future. How was I to come in and sit, steadfast, at his bedside day after day if I had no hope for a child who had all the odds stacked against him? It unnerved the doctors. I actually had one confront me one day. She said, ‘We’re concerned about you. We don’t think you’re being very realistic.’ I could have slapped her. I calmly told her that, while reality and I were very well acquainted, we weren’t friends and that I was going to continue to have hope and plan for my son’s future.

    Don’t roll over on this issue. Don’t stop praying and DON’T STOP HOPING. You are his mother. You have every right to hope and no one can take it away.

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