Noah got down on the floor and played with Big Sis the other day. We’ve been making it a part of his regular routine. I have to tell you, I don’t know why I hadn’t thought of it before until I saw the little boy next door on a vent doing it. It’s so great! I can hover over him on all fours and smooch the heck out of him! I LOVE it!

Shhhhhhh…Noah had a fortune cookie last night! I broke it in half and let him feel the rough texture at the break site, then put the smooth fold in his mouth. He sucked it a little with his tongue but I didn’t want it to get too soggy and break in his mouth, so just the taste had to suffice. That, along with his coffee beans this morning, makes for a yummy combo.

Well, we’re having another care conference tomorrow at 2pm to talk about some care options for Noah, possibly caffeine therapy and to discuss drugs like Mestinon and 4AP. We were told we should have one every couple of weeks while we are here, but since the docs that are specialists don’t have any more tests to run, one of them didn’t really seem to feel he needed to be there and wondered why we were having one again…I’ll tell you what, we are grateful for the care support that Noah is receiving, ie the 3North team is great, but I must say that if I haven’t made it crystal clear, our hope is not in any doctor on this earth, so whether they show at the meeting or not, it’s of no concern to me. We trust the Great Physician. Hey, it just occurred to me…you know how you have to wait for a ridiculous amount of time in the waiting room for your scheduled appointment with the doc? WELL, we’re in the miracle waiting room…what we do in there is the other part of it…we can sit around and read magazines about “Who Cares”, we can get impatient and annoyed that the doc “overbooked” himself, or we can wait patiently and know that He knows we are there and our appointment stands. No need to reschedule… Posted by Picasa



8 Responses

  1. This miracle will make the wait seem like nothing. God is there and at all times. No need to even make an appointment.

    Will be praying for you, as always.

  2. Hey Adrienne! How cool that you guys can get on the floor and play with Noah. I am praying that one day soon he will be tackling Emily like any little brother should. You never cease to amaze me Adrienne! You are a stronger woman than I and I want to be more like you!!! I am still praying for that little miracle that will break Noah’s case wide open!!! Love you and hang in there! Easier said than done I know but you are doing a wonderful job for what you are going through!!!!!!!

  3. Adrian: I read in the Wall Street Journal about a disease named Pompea that sound a lot like Noah’s. Have you checked it out?

    Bill James

  4. Adrienne,
    We continue to pray, pray, pray and pray some more. God has something INCREDIBLE for Noah and all of you. What is it? Not for us to know, but you all will know some day. Tell Emily is missed at school. Love you all, Thama

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