Noah is out of surgery and sleeping now in his room. He’s doing good. We still can’t hear him cry because of swelling from normal surgery. He’s been “fasting” all day because he needed an empty stomach for the g-tube. His face is swollen from all the adhesives…they tape their eyes shut so their corneas don’t dry out during procedures…well, Noah is sensitive to adhesives, so he’s extra pink and extra puffy right now. *Parental creative suggestion: place cotton balls over eyelids prior to tape placement!!!

Since he grew over the last month while “tubed” his cheeks grew on either side of the tape, so there’s a horizontal dent under his nose from cheek to cheek! It just takes a little time for the swelling to go down.

The docs took a muscle biopsy and sent it to pathology right away. The metabolic geneticist will meet with us on Monday after he reviews any findings from the skin and muscle biopsies. Also, the audiologist came in while Noah was still sedated and did her testing. She’ll review that and get back to us next week.

I’m going home to have a slumber party with Em and the boys will hang here tonight. THANK YOU ALL FOR YOUR PRAYERS AND SUPPORT! God is good!



19 Responses

  1. Hi Adrienne & Jason,

    I’ve just caught upon the past few days of your blog. Thank you for the updates on your precious Noah (and yourselves). It really does help to be able to focus our prayers for y’all.

    I think of & pray for y’all so often. May God continue to show himself true to you in many different ways.

    ashley thomas


  3. HALLELUJAH!!! I have been praying for him off-n-on for the past 18 hours and have wondered how he faired through the surgery. Was SO relieved to get an update when I checked this morning.

    As a chronic sufferer of allergic reactions to adhesive tape, I can completely relate. Half the time it ends up being more painful and irritating than the original wound! OY! Aloe Vera gel helps, but not sure if you can apply anything like that on him while he’s there. BUT, I’ll add that onto my list for the little guy.

    Glad your spirits are up and you are remaining encouraged. You are an amazing family. Thanks to all of the contributors throughout the course of your lives that have prepared you for this immense challenge. I know this attitude does not come in a box via Federal Express on your front doorstep. Rather, it comes through getting the crap beat outa you a few times and choosing to trudge through it and learn in the process rather than ignorning it, supressing it or refusing to acknowledge it. Your choices throughout this entire ordeal have been admirable and true to our God above and for that, I know you have been blessed and will continue to be so. You remind me of this scipture:

    II Peter 1: 3-11
    His divine power has given us everything we need for life and godliness through our knowledge of him who calles us by his own glory and goodness. Through these he has given us his very great and precious promises, so that through them you may participate in the divine nature and escape the curruption in the world caused by evil desires. For this very reason, make every effort to add to your faith goodness; and to goodness, knowledge; and to knowledge, self-control; and to self-control, perseverance; and to perseverance, godliness; and to godliness, brotherly kindness; and to brotherly kindness, love. For if you possess these qualities in increasing measure, they will keep you from being ineffective and unproductive in your knoweldge of our Lord Jesus Christ. But if anyone does not have them, he is nearsighted and blind, and has forgotten that he has been cleansed from his past since. Therefore, my brothers, be all the more eager to make your calling and election sure. For if you do these things, you will never fall, and you will receive a rich welcome into the eternal kingdom of our Lord and Savior Jesus Christ.

    Thank you!

  4. We love you guys and we are still praying! Glad that surgery went good! Please call if you need anything!
    Love, Ry Amanda Isaac and Brenna

  5. I don’t know if this means anything but I really felt prompted to share. I know that the docs have been very frustrating for you guys! I was praying for Noah a little bit ago, asking God to help me know how to pray and what to ask Him for, wanting to ask for a miracle straight from Him but feeling like the miracle I was supposed to be praying for was a medical one. I don’t know if for your regular docs to find or your ND. And somehow feeling that there is at least one person in particular who God is drawing near through a medical “discovery” so to speak.

    That might be completely insane. If it doesn’t check with you, forget I ever said it. But know that Noah and the rest of you have been on my mind daily. You are being a tremendous influence all over the world.
    Love and prayers!
    Chris K.

  6. hey you super awsome Grave’s fam- just got back into the country and I was happy to read that Noah had a good surg! Unhappy to see that he has picked up some bugs along the way in his stay in the ICU. I will come visit when I get back to work. Love you!!! Nurse Sara.

  7. Hey guys me and john paul are still praying for your family and especially for Noah!! Gladto hear the surgery went well! I will keep praying for you daily, if you need anything please do not hesitate to call! Love you guys!!

  8. I found you blog one day when I was just surfing the web. I just wanted you to know that I’m praying your family and your little boy. I hope and pray that you can find out what is up and it can be fixed or at least help other kids from getting it. I pray God’s peace be with you all for this next week. I just hate to see or hear about kids going thru stuff like this. I hope it all turns out the best for everyone.


  9. It seems so insignificant to offer that God is touching my life as you tell Noah’s story. Thank you for your faithfulness and sturdy perspective — I keep praying that God will honor these faithful commitments you and your family have made. I/we all entrust Noah to God’s healing care, and pray for the BEST outcome. Shalom.

  10. I was away over the weekend without an internet connection so I was glad to come back Sunday night and hear that Noah made it through Friday’s surgery ok. I look forward to another update as to how his and your weekend went.

    I was standing in the kitchen last night when Abby appeared from her room (after having been tucked in earlier) to alert me that no one had prayed with her. So we went back to her room to pray. I started to pray when she interrupted me with “don’t forget about baby Noah”. We prayed that God would reach down His big hand from heaven and touch Noah with His healing power.

    Blessings on your day. Julia

  11. Just to throw something out that you probably know, breast-fed babies almost never have formed stools,that’s just one of the benefits of breast milk. So are you sure it was clinical diarrhea or just typical breast milk stools?

  12. Adrienne,

    Our little Adelle…2.8 years old insists every night on praying for “Lukey’s (0.5 years old) friend baby Noah”. Know that you guys are constantly in Jim and I’s prayers as well.

    Jen Stumbo(Gray)

  13. Hi Adrienne & Jason. I am a friend of your Aunt Diane’s. I live in New York. I just recently had a baby Boy ((he is 9 months) I am so pleased that your Noah (beautiful name) is out of surgery and seems to be sleeping peacefully. Our prayers are with you all.

    God Bless!!

    Jeri, Mike and Andrew Soldner

  14. Oh I am so relieved, God is so good. Your little boy is so beautiful that it almost hurts to look at him. I will continue to pray for you and yours!!!P.S. I am a new Blogger and I don’t know how to post my e-mail on it yet. We have never met, I found your Blog through a friend of mine. So that’s how this wacky web works,touching lives that would otherwise go un-touched,kinda like our wonderful God huh?

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