Waiting for a Miracle

After more than 26hrs without sleep and only 4 hours of sleep to begin that with, I decided to take some Midol PM and get some rest at about 5am.  I slept until 2pm so I haven’t been to the hospital yet but my Mom was there for the last three hours holding him.

Bascially this is where we are…

His blood count levels are back up so they won’t for now need to give him blood.  That’s really good because I guess with infants giving them blood makes their own bone marrow stop functioning for about a month.

He’s off all the anti-biotics because his CBC is stabilizing and CRP (these blood test that shows signs of infection or inflammation) has come down.

He only had one small bloody stool last night and hasn’t had one today but he did need Morphine again last night.  He seems to need it about every 24 hours.

The Dr.’s have basically given up on looking for now.

The GI specialist suggested the CAT scan a few days ago but the surgeon said, “We wouldn’t even know what to look for that wouldn’t have already shown up on at least one of the other tests” and I guess it would dump a lot of radiation into his little body and he’s already had so many x rays.

So for now we are just waiting to see if the bloody stools and bile in the stomach just miraculously go away.

One Dr. suggested a camera and a biopsy but since things seem to be maybe trending towards an upswing we are just going to wait and see.

I’m headed to the hospital now.  Every time I change his diaper I have to gather all my inner strength.  If there is blood I start to shake and it takes everything in me to remain composed.  I usually calmly finish changing him, while the nurse runs to get the Dr. who then comes to tell me some wordy, lengthy version of, “Yep, he’s bleeding and can’t eat and we don’t know why.”  Then I go to the bathroom and sob for 30 seconds, gather myself and go rock my son back to sleep.  But at least then I had hope that the tests would show something and there would be a cure.  Now I just have to hope for God’s healing because the Dr.’s can’t do it.

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6 Responses to Waiting for a Miracle

  1. Georgia says:

    Amanda, God will not give up on his people and his children. Humans have a tendency to give up in a way if they don’t have an answer. God has an answer and we will just keep praying. I cannot be at Dee’s tomorrow at 4:00 but I will be there in spirit and I will gladly lift Levi in prayer wherever I am. I love you, Josh, Jayden, Levi your mom and dad and Levi will be home with him family!

  2. Becca says:

    Manda my love I am believing that all things are now on the up swing for Levi. He is a miracle waiting to shine! I will not be at Dee’s physically but you can be sure that I will be there in spirit and will be praying and agreeing from home. I love you and can’t wait to meet Levi!

  3. Andrea Oakley says:

    All my love, Amanda, to all four of you.

  4. Noahs Dad says:

    I randomly came in contact with your blog tonight. You don’t know me, but we have a son that was born on Dec 15, 2011 with Down Syndrome. We had no idea ahead of time. Then a few days later we were told that our son, Noah could have a very rate genetic disorder known as GA-1. In fact it’s so rare that if Noah was to have GA-1 and Down Syndrome we were told that he may be the only known case! Great! Just want you want your kid to be known for – I thought! You can read the story here –


    Long story short, everything is ok! God worked it out! I just prayed for you, and your family. I will save your site so I can stay posted!

    We have a site called http://NoahsDad.com where we put a daily one minute video up of Noah and our family so the world can see what raising a child with Down Syndrome is like. I hope you’ll swing by there so we can stay connected!

    -Rick (noahsdad.com

  5. Mom says:

    I just sat and cried today while the docs examined him. Not because I’ve given up – I haven’t. But just because I want him home. And, as I told the nurse, I HAVE given up on trying not to cry. I feel a real sense of hope now that we are through all the tests, because I trust God more than docs anyway.

  6. Sandie Higley says:

    Father, I thank You for these signs of improvement! I know that Levi is on Your heart–especially when You orchestrate middle-of-the-night prayer meetings for him between people who don’t know each other. We are so thankful for how You are going to continue to touch his little body and bring it to complete healing in Jesus name. I ask for Your peace that passes all understanding to guard Amanda and Josh and her mom and everyone directly related/caring for this little one right now. I speak “peace be still” over the situation. I ask for rest and refreshing for Amanda. Thank You for all the miracles that are happening right now even though we can’t see what is going on, and for the ones that are on the way!

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