Noah has been progressing in most areas - slow progress, but progress none the less. Many of his labs are looking better. His coagulation labs are staying about the same but his platelets are continuing to fall (get worse). His fevers have been very low grade and he has been sitting and playing for very brief periods - maybe 5 or 10 minutes tops - but this is SO much better than he had been doing. They even disconnected the drain from his stomach because he was just draining regular stomach juices.
He seemed more tired today. He was alert and aware, but not really engaging too very much except for some extremely brief periods of playing (most of which was done lying down). He took a 4 hour nap this afternoon, had a sponge bath, then played with the water for quite a while before suddenly announcing that he wanted to sleep. He turned right around and climbed under his very wet blankets and curled up like he was going to sleep. It took a bit of effort to persuade him that we needed to put dry sheets on his bed.
We checked his temp and other vitals because he was acting odd, and they were basically OK with a minimal fever of 100.4 . He stayed curled up in bed sorting of dozing in and out then suddenly began heaving and vomitting. His temp was up to 102.6 and he was looking really rough. The doctor came in and checked him out. Noah's belly has gotten very quiet again, the drain bag is hooked back up, and no one knows why he is looking worse. It's one thing to be getting better without knowing why, but it is another thing altogether to be getting worse and not knowing why.
The doctor said that he will be watching Noah closely and that if Noah gets any worse they will be calling the surgeons back in for another look as well. Right now he is just sleeping.
It is just very hard to see him looking worse when it seemed like we were really on the right track. At this point we don't know if this is just a bump in the road - sort of a last hurrah for whatever has made him ill - or if he has truly taken a turn for the worse. His last turn for the worse was nothing short of terrifying and I'm really concerned about him right now.
Thank you so much for your prayers and comments. Please don't stop praying.
The song below my post ministered to me these past days. I feel as if I don't have very much to say, but this song says a lot.
We continue to pray here in WI. My 8 yr old told me this afternoon that he had requested prayer for him at SS yesterday. He told me he remembered his name and that he was very sick and nobody could figure out what was making him so very sick.
Kate, we are continuing to pray for you all. Thank you for updating us again so soon! I pray this is indeed just a bump, a last hurrah. May He give you and all your family peace and rest tonight!
That's one of my favorite songs, Kate. How confused you must be. Nothing takes God by surprise. He IS mighty to save. Many are standing in the gap for you. Just love on him, try not to think so much, and keep trusting in God's perfect sovereignty. Love, Billie
I have been following Noah for probably about a year and a half now. Your family is so precious and I hate hearing that Noah is sick. We will for sure continue to pray for him and your family. My kids love the song Mighty to Save and are often singing it around the house. As I was thinking of all that little Noah and your family have been through, another song that my kids often sing came to mind. I hope you can find time to listen to it and that it will encourage you.
Hi. My name is Kelli Morton and a friend of mine told me about your family. We also live in upstate SC and I have a 7 year old son who has Mitochondrial Disease. He was diagnosed with Mitochondrial Encephalomyopathy Complex 1 and another partial complex defect in December 2004. I just thought I would tell you "Hello!" We also home school him, He does have significant dev delays since his form of the disease causes damage to his brain as well so he is more like a 2 year old. He is our only child. If you would like to know more about him or like to contact me my email address is babybearbuzz@peoplepc.com and his caringbridge page is www,caringbridge.org/visit/buzzlightyearchristopher. I will remember your family in our prayers as we do each family affected by mitochondrial disease. God Bless.
We sing that in church a lot, I love it, it is powerful. So glad it ministered to you. Another song that is ministering to me right now is called You Are God Alone....I have it on a cd and belt it out proclaiming He is God alone in the good times and bad.....
Hang in there Kate, I have been praying for you and for Noah. Thanks for updating so we can be reminded to keep praying and seeking Him on your behalf.
I was wondering what was going on, please keep us up to date, even if it's just Twitter. Been praying like crazy and will continue to pray for Noah and for you.
Oh Kate, I wish that we lived close. I would come and visit, help with children and meals. Sit and visit and bring StarBucks. I would bring hugs and lots of them. My family and I live well over a thousand miles away. Please know that we are praying. The Lord has given you and your family a great trial. He's also given you great strength. In our weakness He is made strong! Praying for for you and your family no matter how far away! Karen
Kate, I love that song too. I am not a member of the homeschool blogger.
I am grandma to eight so far from our 2 sons. All but the babies are home schooled. Our daughter has no children yet. I live in W. Washington State.
I pray for you and your dear family. Noah has a place in this grandma's heart.
I have a photo I'd like to email you. I took the photo at a women's conference in August. It was painted during worship songs. I sent it to our younger son and his wife when she was expecting this year. That baby died and was taken in D/C at her 12 week gestation date this past September. They said the photo was comforting to them.
with love,
Linda Lee
mamalee50@gmail.com
Dear Kate, I know how hard it is to see out little ones suffer. At a time like this it is such a privilege and comfort to know the wonderful God of our salvation Whose love for Noah, as for us, is above and beyond our own.
I'm so glad you've been able to draw faith, strength & comfort from that lovely song. Now, when things look uncertain & faith is being tried, is when that precious commodity most needs to be exercised. In the exercise of it, it will grow stronger.
When Noah looks worse, is just the time to praise God for his healing. It will be easy to do when we see his healing - that won't take faith at all. But now is the time to exercise the faith without which it is impossible to please God. The faith that the writer of Hebrews tells us enabled women even to see their dead raised to life again, and enabled Sarah to conceive and bear a child when she was past the age.
All of which to say that faith can surmount the insurmountable, and rejoice in the face of hope threatened, secure in its trust of the One in Whom that faith is placed. And 'tho it is God Who effects the victory, He needs our faith to work with. The writer of the Hebrews tells us that it was by faith that the heroes of Chapter 11 obtained promises (verse 33) & out of weakness were made strong, becoming valiant in battle (verse 34).
I pray for you and with you that you will find such faith rising within you as you hold God to His promise that the effectual fervent prayer of those He has made righteous will avail much. Hold on dear sister, for victory.
I'm so sorry Noah's taken a turn for the worse. I will pray that it will be a brief "bump" and he'll improve rapidly today.
Lord, please touch Noah's little body and bring him healing. Please give his loving family peace and trust in You during all this uncertainty.
I will pray this for you today. In whatever way God shows up He will show up and Save.
I will pray for a speedy recovery for your little guy!!!
Also for strength for your family and for God to be with your other children as this cannot be easy for them as well.
I have no idea if this helps or not, but Noah and your story is very faith-strengthening to me and I am sure to others. It is good for us to pray together. I think when the bible says where 2 or 3 are gathered in His name then He is there, well I think this most likely includes when we are in agreement and are together on a blog like this. I will continue praying for you.
Love in Ohio
Praying that God will comfort all of you and especially Noah during this time of distress. He IS a Mighty God who saves. May He hold you in peace in the palm of His hand. I pray this in Jesus name.
Amen.
In the name of Jesus, Noah, you are healed and set free of all the works of the devil in your body. In the name of Jesus, your body shall return to normal, now, and line up with the Will and the Word of our Father, which is to be well. Through the power of the Holy Spirit, in the name of Jesus, healing and a miracle shall manifest in your body and life.
Matthew 10:7-8
7. And as ye go, preach, saying, The kingdom of heaven is at hand. 8. Heal the sick, cleanse the lepers, raise the dead, cast out devils: freely ye have received, freely give.
I thank you and praise You my Father, may all glory be yours forever.
Oct. 27, 2009 - Praising God for Complete Healing and mountain moving Faith!
Posted by Anonymous
Dear Kate,
We are praying for you, Noah and your precious family. We will be praising God today for the complete healing that Jesus provided when he took those awful stripes on his body.
Isaiah 53:4-5 (Amplified Bible)
4 Surely He has borne our griefs (sicknesses, weaknesses, and distresses) and carried our sorrows and pains [of punishment], yet we [ignorantly] considered Him stricken, smitten, and afflicted by God [as if with leprosy].
5 But He was wounded for our transgressions, He was bruised for our guilt and iniquities; the chastisement [needful to obtain] peace and well-being for us was upon Him, and with the stripes [that wounded] Him we are healed and made whole.
Those stripes left his body like a raw piece of meat--he was beyond recognition!
Isaiah 52:14 (Amplified Bible)
14 [For many the Servant of God became an object of horror; many were astonished at Him.] His face and His whole appearance were marred more than any man's, and His form beyond that of the sons of men--but just as many were astonished at Him,
Isaiah 52:14 (New Living Translation)
14 But many were amazed when they saw him.
His face was so disfigured he seemed hardly human, and from his appearance, one would scarcely know he was a man.
We are praying for this mountain of sickness to be removed from Noah.
Mark 11:20-26 (New Living Translation)
20 The next morning as they passed by the fig tree he had cursed, the disciples noticed it had withered from the roots up. 21 Peter remembered what Jesus had said to the tree on the previous day and exclaimed, “Look, Rabbi! The fig tree you cursed has withered and died!”
22 Then Jesus said to the disciples, “Have faith in God. 23 I tell you the truth, You can say to this mountain, ‘May you be lifted up and thrown into the sea,’ and it will happen. But you must really believe it will happen and have no doubt in your heart. 24 I tell you, you can pray for anything, and if you believe that you’ve received it, it will be yours. 25 But when you are praying, first forgive anyone you are holding a grudge against, so that your Father in heaven will forgive your sins, too.”
Amen to what Marlene Wilkinson wrote--what an encouraging word!
Kate, I do hope this is just a bump in the road for Noah and that he is on his way to getting better. I will keep him in my prayers. I truly enjoyed the song. Love, Ruby
I am sorry that Noah may be getting worse again. I am thankful that he was up a little and talking!! I pray that he is much better today and his tummy is behaving.
You are all in my thoughts and prayers.
Love ya,
Cole’s (Caring Openly, Loving Eternally) prayer team
www.colesfoundation.com
Sandy Daron
Hi Kate,
Just want to let you know we are still praying, praying, praying! Thanks so much for the update. We are sure hoping this sudden turn is just a "last hurrah" and that Noah will be feeling well enough to go back home soon! God bless you all!
Hi! Im sure you won't remember me but we met (im pretty certain) during one of Noahs hospital visits. I also had a little Noah who was admitted into GMH at the end of June 2009. We met in the playroom. At the time, you were hoping to be discharged in time for a surprise for your older daughter. I came across your blog and the pictures of your children looked very familiar!!! Then it hit me... Wait!! I know this family!!! I pray Noah is doing well. What a small world. I have a blog over at www.thegapgirl.blogspot.com
Amy
Hi, I just wanted you to know that here in colorado, we are still praying for Noah to feel better, and for peace for you. My little sophie prays for noah at the most unexpected times. I love to hear her in the back of the car asking God To help Noah. I never know what might prompt it, perhaps it's the holy spirit.
All I know is that we are pulling for you and praying for you.
In Christ,
Chris, Tim, Kate and Sophie OUrsler
Kate,
We have been praying for Noah since we first heard about this and I have a question.I've been watching these medical shows on tv and some of them talking about problems with people where they couldn't figure it out.Come to find out,it's parasitic,has this been looked into?I'm sure it has,just throwing this out there.It could come from any place he was swimming or drinking water.Kids drink out of these outdoor faucets,hoses,etc.I've wondered this,because it's affected his stomach.
Thank you for leaving that song. It is true. If God can move mountains, then He can move in our children's lives. He is mighty to save. Noah is always in my heart and prayers and so are you Kate. We are going through very similar issues with our little girl that Noah is going through. It is frustrating, but God is bigger. Thank you for your testimony. I will keep praying.
Take a look at our sometimes crazy but always blessed life as we homeschool our eight children, run a homeschool business, and serve God as He leads us. You can also follow our baby Noah as he struggles with some serious health issues - we covet your prayers for him.
If you're led to send a financial gift for Noah or our family and wish to use Paypal, you can do so by clicking this Paypal Donate button. Feel free to indicate how you want your gift used. We will honor your request.
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Oct. 26, 2009 - Untitled Comment
Blessings,
Sandwich