Our Quiverfull

May. 9, 2009

On the right track!

Posted in Noah Updates
Noah is (drum roll, please . . . ) doing better!  His fevers are lower and his labs are looking quite a bit better this morning!  While we still don't know what is wrong, things sure seem to be taking a real turn for the better.  I don't know if the new antibiotics are doing the trick or if this illness is just running its course, but I sure am glad to see things looking up!

Noah is still really sick, and he still has some hurdles to jump.  We need to figure out why his blood sugars keep dropping.  We need to transfuse him but everyone wants to wait until he feels a little better since his hemoglobin isn't critically low.  We also need to get him feeling better.  His liver is still enlarged and only time will really tell if the liver issues were caused by this infection or if this is the beginning of TPN-induced liver failure.  His spleen was enlarged yesterday for the first time.  He is paler and seems to be weaker - he had a hard time sitting up today.  He is also fussier and saying things like "I scared" more often.

I have a lot of questions for the doctors when they come by today.  The newest antibiotic targets gut infections and Noah seems to have improved when that drug was added.  If this is a bacterial overgrowth or other gut infection, I'm not sure what the treatment course will be or even how we could know if this was the culprit.  (We DO know that he does NOT have a surgical abdomen right now - no abscess or surgical "fixable" problem.)  While most of the team has been certain that this infection was bacterial, and while all viral studies have come back negative, I don't know how they will interpret Noah's improvement - that he is responding to the new antibiotic (and therefore we should continue the antibiotics, even though they bring their own complications) or that this was some weird virus and we should stop the antibiotics (even though if they guess wrong there, the infection could come back even worse).  Like I said, all viral studies have come back negative, but since Noah is transfused so often he could have picked up something really off the wall from blood.  All blood product are screened very carefully but nothing is foolproof.

I appreciate all of the suggestions for Noah's rash, and want to try to gather the materials for some of the homemade remedies so I have them next time he is admitted.  I am a big fan of the "slather stuff on super thickly" school of diaper rash thought, and that is the direction we started taking a day and a half ago.  I got my mom to bring up a huge tub of Triple Paste and I've been putting on so thickly that it looks like frosting.  :-)  It is definitely helping, but this rash is a two steps forward, one step backward sort of thing.  He fights the cream but clearly feels relieved once it is on.  Poor guy.  At least we are making progress there and not really losing ground.

I need to respond to one of the comments left yesterday.  It was suggested that we are making Noah "pay the price" by suffering through these infections so that we can enjoy him when he is healthy, and that perhaps it would be less selfish to just "let him go" since his overall prognosis is so grim.  I know it can be hard to communicate well with a keyboard, but I want to be perfectly clear that we are NOT at the point of making end of life decisions.    Yes, he is suffering.  No, we don't want him to suffer.  Yes, he will probably land right back here with another infection of some sort before too long, but there is NOTHING we can do about that.  There can be times to step back and make someone comfortable - times to stop fighting so hard, but this isn't one of them.  We aren't ready to stop.  Noah sure isn't ready to stop.  I was talking to one of Noah's nurses about this blog comment and she said that to stop treating this infection would be euthanasia - it would be killing him, not letting him go.  The Great Physician gives life and I am fully confident that He will let us when and if we need to make those kinds of decisions.  This is not a matter of taking extraordinary measures to temporarily and artificially prolong life. 

I HATE seeing Noah suffer.  I would never allow him to suffer so that I could selfishly enjoy him.  Right now the APPROPRIATE response to this suffering is to help him fight, see him improve, and take him home where he can continue to thrive and grow and blossom.  Yes, he suffers even when he is doing "well," but he loves life.  He loves his family and his friends and his pets.  He is the most utterly cheerful person I know and he takes delight in almost everything he encounters.  He is so brave, even though he shouldn't have to be. The best thing we can do for him day by day is protect him and nurture him and love him and fight for him.  We can read books and blow bubbles and go to Starbucks and play with his trains and stroll through the zoo and have tickle fests and color pictures and laugh at his really absurd jokes and snuggle up together to watch his favorite movies.  We can protect him from as much emotional trauma and physical pain as possible.  When we can't protect him, we can be there for him to hold his hands and tell him that he is an amazing person and that we are proud of him and that we love him more than any words could ever say.   When the day comes to tell him goodbye, we will tell him to fly to the One who loves him even more than we do, but that day is NOT HERE.  It is NOT NOW. 

Now, *wiping eyes*, on to something far more upbeat. We've been overwhelmed by support.  Noah had more than 4,000 visitors yesterday, which is just amazing - and many of those visitors represent entire churches, prayer groups, etc.  We are so thankful for your prayers, love, and support, but we would like to ask you all to do one more thing.  Every so often we will get a package, gift, or card for Noah from one of you.  Sometimes you will include a picture of yourselves, your children, etc.  We always enjoy those pictures (Noah REALLY loves them) and put them on our fridge, but our fridge has quite run out of room!  We have a long hall in our home with a long blank wall, and we want to turn it into Noah's Prayer Warrior Wall.  We're going to hang a large wall map and surround it with the pictures that you have sent us.  We will mark the origin of each picture on the map.

Here is what we want you to do.  Would you send us a picture for our wall?  It can be a picture that you already have, but we would really love it if the picture in some way showcased where you are from - maybe in front of a landmark, regional plants or scenery, or something else creative.  You could hold up a sign or a picture of something regional. It's OK to send another picture even if you've sent one before (some of them have been "loved to death") and it would be great to get picture of people Noah already knows.  Even if you see him all of the time, he would get a kick out of getting a picture from you.

If you want to score BIG, BIG points with Noah, it would be awesome to incorporate a zebra in the picture.  You could have a toy zebra, a picture of a zebra, a cake or cookie that looks like a zebra, again just be creative.  He would get a huge thrill out of finding all of the zebras in all of the pictures.  I don't want creativity to keep you from doing this, and we would rather have a family snapshot from 6 months ago than no picture at all, but if your family enjoys getting creative then please have fun with this.  Lots of times children send Noah wonderful artwork (and we save every piece of it!) - if your child is sending a masterpiece maybe he or she could also hold that up in the picture so Noah can keep matching faces to art.  :-)  You could also hold up a note or message to Noah in your picture.  Please do be sure to jot your names (and a prayer or note) on the back of your picture(s) in case they get separated from their envelopes before we can hang them.  Speaking of envelopes, we want to cut any foreign stamps off of the envelopes and put them on the map too. 

Noah will have a lot of fun with this and it will also be a huge blessing and encouragement to his siblings and Jeff and I!  (Some newer readers have asked about Noah's siblings.  They are Hannah, 15; William, 14; Matthew, 12; Timothy, 10; David, 8; Sarah, 6; and Mary Faith, 15 months)

Noah really loves mail and it would be great if some of these were waiting for him when he gets home.  You can mail them to him in care of our business:
Noah Estes
c/o Hands and Hearts
206 Yosemite Dr.
Greenwood, SC 29649

It would be so amazing to really overwhelm Noah with pictures like this.  We would love it if each and every one of you sent him a photo (or drawing if you don't have a camera or aren't comfortable sending a picture of yourself!).  If you know other people who pray for Noah, please ask them to send a picture too.  Your love and prayers have sustained us, and I know that it would be so incredible to physically see a tangible reminder of who you all are.  In a few weeks, we will take a picture of the wall so you can all see it!

Please continue to pray, and to ask everyone you know to pray.  We still have a long way to go here.

Blessings,
Kate


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Comments

May. 9, 2009 - *dances around throwing cofetti*

Posted by Nachoaveragegirl
GO NOAH!!! I am so happy he is doing at least a little better! *hugs hugs hugs* Love ya Mum!
I'd send more cookies up with Daddy today, but they are all gone. *hands Mum some virtual cookies to make up for it* When you get home, I'll make some more.

:-) Can I give Noah a picture av me to post on his wall?

*hugs* Love you Noah! Keep fighting, buddy!

In Christ alone,
Hannah Grace.
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May. 9, 2009 - Untitled Comment

Posted by Anonymous
Praising God for Noah's improvement, Kate. We'll send you a photo.....sometime...somehow from somewhere...packers come this week so I bet it will be from the road or Japan.

I'm sorry you have to deal with painful comments....I KNOW you and Jeff are not selfish and are simply doing the very best you can to walk with Jesus in the midst of this hard path.

Know that you are often in our family's prayers.

De'Etta
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May. 9, 2009 - Great to read your news

Posted by jjustus
Hang on, Kate. The Lord is the Keeper and Master of our days.

Our family is praying for you.
Love,
Janis
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May. 9, 2009 - Untitled Comment

Posted by jewell
I was thinking of sending you the following verses, and was delighted to come to your page to find this wonderful update!
My natural, protective nature wanted to throw up and then wish upon the blog reader the "compassion" which was shown to you. But the LORD is bigger than that...and I do now home that when that blog reader(s) face terrible pain in their lives, they will be shown true compassion and kindness.

Praying, rejoicing...and going to set my kiddos on a creative pic spurt!

May the Lord yet reveal all that needs to be known, encourage and enable, clarify and grant knowledge, to all those who care for you and yours.

Love in Christ
Monique for the Stams

(New International Version)

Isaiah 40
Comfort for God's People
1 Comfort, comfort my people,
says your God.
2 Speak tenderly to Jerusalem,
and proclaim to her
that her hard service has been completed,
that her sin has been paid for,
that she has received from the LORD's hand
double for all her sins.

3 A voice of one calling:
"In the desert prepare
the way for the LORD [a] ;
make straight in the wilderness
a highway for our God. [b]

4 Every valley shall be raised up,
every mountain and hill made low;
the rough ground shall become level,
the rugged places a plain.

5 And the glory of the LORD will be revealed,
and all mankind together will see it.
For the mouth of the LORD has spoken."

6 A voice says, "Cry out."
And I said, "What shall I cry?"
"All men are like grass,
and all their glory is like the flowers of the field.

7 The grass withers and the flowers fall,
because the breath of the LORD blows on them.
Surely the people are grass.

8 The grass withers and the flowers fall,
but the word of our God stands forever."

9 You who bring good tidings to Zion,
go up on a high mountain.
You who bring good tidings to Jerusalem, [c]
lift up your voice with a shout,
lift it up, do not be afraid;
say to the towns of Judah,
"Here is your God!"

10 See, the Sovereign LORD comes with power,
and his arm rules for him.
See, his reward is with him,
and his recompense accompanies him.

11 He tends his flock like a shepherd:
He gathers the lambs in his arms
and carries them close to his heart;
he gently leads those that have young.

12 Who has measured the waters in the hollow of his hand,
or with the breadth of his hand marked off the heavens?
Who has held the dust of the earth in a basket,
or weighed the mountains on the scales
and the hills in a balance?

13 Who has understood the mind [d] of the LORD,
or instructed him as his counselor?

14 Whom did the LORD consult to enlighten him,
and who taught him the right way?
Who was it that taught him knowledge
or showed him the path of understanding?

15 Surely the nations are like a drop in a bucket;
they are regarded as dust on the scales;
he weighs the islands as though they were fine dust.

16 Lebanon is not sufficient for altar fires,
nor its animals enough for burnt offerings.

17 Before him all the nations are as nothing;
they are regarded by him as worthless
and less than nothing.

18 To whom, then, will you compare God?
What image will you compare him to?

19 As for an idol, a craftsman casts it,
and a goldsmith overlays it with gold
and fashions silver chains for it.

20 A man too poor to present such an offering
selects wood that will not rot.
He looks for a skilled craftsman
to set up an idol that will not topple.

21 Do you not know?
Have you not heard?
Has it not been told you from the beginning?
Have you not understood since the earth was founded?

22 He sits enthroned above the circle of the earth,
and its people are like grasshoppers.
He stretches out the heavens like a canopy,
and spreads them out like a tent to live in.

23 He brings princes to naught
and reduces the rulers of this world to nothing.

24 No sooner are they planted,
no sooner are they sown,
no sooner do they take root in the ground,
than he blows on them and they wither,
and a whirlwind sweeps them away like chaff.

25 "To whom will you compare me?
Or who is my equal?" says the Holy One.

26 Lift your eyes and look to the heavens:
Who created all these?
He who brings out the starry host one by one,
and calls them each by name.
Because of his great power and mighty strength,
not one of them is missing.

27 Why do you say, O Jacob,
and complain, O Israel,
"My way is hidden from the LORD;
my cause is disregarded by my God"?

28 Do you not know?
Have you not heard?
The LORD is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.

29 He gives strength to the weary
and increases the power of the weak.

30 Even youths grow tired and weary,
and young men stumble and fall;

31 but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.
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May. 9, 2009 - Keep Up the Good Fight!

Posted by Anonymous
Kate and Family,

Our family of 11 faithfully reads your blog and prays for y'all. I just want to encourage you in your response to the reader who suggested that you were holding onto Noah selfishly.

Thank you for your stand for the life that God alone can create and give and the life alone that God can take. Have you seen the video about Joel's Journey? If not, you can read Joel's family blog at http://weloveyoujoel.blogspot.com and you can get the video at Vision Forum or possibly on their blog too. As he struggled with cancer and the doctor's wanted to pull the plug, his family stood strong for the life of the blood that Scripture speaks about. They faced lawsuits from hospitals as their son lay comatose because they refused to pull the plug until the Lord called him home.

Our world today lives by an evolutionary worldview: the survival of the fittest, instead of living out a Biblical worldview, that the Lord alone creates, gives and takes life in HIS time!

I want to encourage you to continue to love on and fight for Noah until the LORD takes him home, just as you do for all of your children. Not a one of us knows what the next moment may bring. But the LORD does, and in His sovereignty and providence we place our very lives and souls.

Bless you for your stand for the Lord and His truths. Bless you for your love and stand for Noah, God's unique and precious creation.

In Him,
Mommaof10
http://PlymouthRockRanch.com
Recording the Faithfulness and Provision of God for Future Generations

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May. 9, 2009 - Praising God

Posted by Anonymous
My family and I are praising God that Noah is showing improvement. I hope and pray that somehow throughout this you are able to get some rest and everything is going smoothly at home with the rest of your beautiful family. I am praying for guidance and strength for your family and the doctor's. The Lord is the Ultimate Doctor and He alone will decide when Noah will join Him. I completely agree with what the nurse said. And until the Lord calls Noah home I believe He wants your family and the doctors to do everything you can for him. Anything else would be giving up. Where the faith in that? The Lord gives us mommy instincts for a reason. It's to guide us to be the best mommy we can be to care for, love, and raise the children He has blessed us with. Your faith throughout all of this has been a true inspiration to me.
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May. 9, 2009 - Praising God

Posted by Anonymous
My family and I are praising God that Noah is showing improvement. I hope and pray that somehow throughout this you are able to get some rest and everything is going smoothly at home with the rest of your beautiful family. I am praying for guidance and strength for your family and the doctor's. The Lord is the Ultimate Doctor and He alone will decide when Noah will join Him. I completely agree with what the nurse said. And until the Lord calls Noah home I believe He wants your family and the doctors to do everything you can for him. Anything else would be giving up. Where the faith in that? The Lord gives us mommy instincts for a reason. It's to guide us to be the best mommy we can be to care for, love, and raise the children He has blessed us with. Your faith throughout all of this has been a true inspiration to me.

Lynn and Family in FL
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May. 9, 2009 - Rash

Posted by Anonymous
Two of my three sons have inborn pancreatic deficiencies, so digest poorly and struggled with diaper rash due to intestinal yeast/fungus (side effect of poor digestion or antibiotics). We gave them tons of acidophilus orally to battle the yeast/fungus in the gut, but nothing helped the rash itself until we put acidophilus powder in a bit of whole milk (lots of good fat!), let the acidophilus grown at room temp for 30 minutes or so, then put that soft paste on the diaper rash. Worked tremendously, because the acidophilus actually ate up the yeast/fungus growing in the rash. Don't know if that will help with Noah's situation or not. We continue to fight for Noah in prayer!
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May. 9, 2009 - Joy!

Posted by Anonymous
I am so glad that he is doing better....we will not stop praying.

Linda in Atlanta
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May. 9, 2009 - May 9,2009

Posted by Anonymous
Hi Kate,
Never, ever give up! From the time I was a little girl we were told my Dad wouldn't live another year. Yes, he has suffered much. Yes, it may have been easier for him to pass. However, Dad has fight and he wants to live! I heard the doctors tell him two years ago he only had days left. Infections from complications of an infected gallbladder. Acute gallbladder pancreatitis. Many, many surgeries, Vancomycin, Genneset, feeding tubes, nothing by mouth for two months at a time, hole in the intestines, went from 175 pounds to 112 pounds, many transfusions, now a huge hernia from all the surgeries. Tubes with bags running from his body catching fluids, he had up to three at a time. Many, many times he had the tube put in for the central line. Horrible things. But, God in His mercy!!!! My dad said "I am not going to die, I want to live!!!" Well, he has been home for one year now and no he can't do the things he did before but he is happy and he is with my mother and he is alive!!!! Right before he got sick he said that he had a vision that the Lord was over him telling him he would be watching over him. Dad couldn't figure out why. Then when he became deathly ill he knew and that really sustained us. Yes, our family really suffered with him and alot of things had to be let go but a whole hospital was praying from nurses, doctors, janitors, visitors, staff, cafeteria workers and Father Charles. My dad is a living testimony of Gods mercy and that prayer works. Noah is too!! Fight for that little guy just as you have been. We are fighting with you. My dad was told he would die soon when I was 10 I am now 53 this year!!! We will celebrate dad's 77th birthday on May 17!!! God is the one in control of Noah and He will decide when it is time for Noah to come to Him. As long as there is life there is hope. It is not up to us to decide to stop meds. we must fight for our family. If the meds stop working some day then you will know.
That is what we did. We never stopped anything on dad and we are glad that we didn't. Even though it was hard on him and us. God has kept dad with us and we are glad and so is he!! I remember when you found out you were pregnant with Noah. It was a very neat announcement. I remember that you had some health issues but God saw you through and He is now!! Noah is a miracle. Noah has touched so many lives that it is amazing!! The faith of you and your husband has been a living testimony of God's faithfulness in times of trouble. I am forever encouraged when I read how you all hang in there and find something good in a hard situation. I am also happy to pray when you are tired or troubled. It has been a ministry that you probably don't even see. I have many problems with a beloved son in prison for many, many, years. I am believing for his miraculous return home. God is big! I have a special needs child that I pray for his future when we are gone. He is 15 and we are older parents. But, again God is big!! You are an encouragement to me many times. Keep up the good fight of faith!! Prayer makes all things possible,
We love Noah and you, and Jeff and all the children.
Janet
Indiana
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May. 9, 2009 - Praying...

Posted by Anonymous
Many hugs and blessings to your family. You are in my thoughts and prayers. I had a critically ill child that the Lord healed. I don't know what plans God has for you and your child, but do trust Him always. This is so difficult for anyone to go through, but only God can be your strength. Look to Him, He always has the answers.

I have tears with you and feel your pain. I wish I could be there and give you a great big hug. I can't, But I pray that the Lord would do this and be this for you. I pray that he would send the right people who can be of help to you when you need it.

Praying for healing for Noah - In Jesus' name, AMEN.
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May. 9, 2009 - Untitled Comment

Posted by Anonymous
We are SO happy to hear Noah is turning the corner!! We've been praying for you all. And, we'll get right on that picture!! Our Noah also LOVES zebras! What a funny animal for two little Noahs to love! A great excuse for us to head to the zoo and take that picture!

Keep up the good work. I know that getting negative selfish thoughtless comments must be discouraging, but just know that the rest of us love and admire your strength to endure these difficult battles. I hope most of your comments bring you the encouragement you need and deserve!

Love,
The Martins in Alabama
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May. 9, 2009 - WELL PUT

Posted by Anonymous
Keep fighting!!!! God is the author of life and we must respect it, preserve it and at times "endure" it until he takes us home. Noah is fully alive. We are with you in spirit and prayer.

The Pages
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May. 9, 2009 - Thanking God for small improvements!

Posted by Anonymous
Dear Kate, I'm excited to see if we can get a picture of Eithene for Noah... hmmm.... :)

I'm sorry you have to explain why its right to keep fighting for Noah- we have had to deal with that too. Its just so hard to explain to those not in our shoes. I'm sorry :(

By the way- the nurses and drs here are ALL OVER me about Eithene's broviac wrap, when you have time (hahahahah) there awaits a busy market for you in the world of broviac wraps. People here want them. VERY badly. Keep asking me over and over and over- its getting annoying actually! Lol! Good talent just cannot be hid! :)

love and prayers

Jessica
www.caringbridge.org/visit/eithenerosehilliard

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May. 9, 2009 - Untitled Comment

Posted by Anonymous
I'm standing utterly amazed that Noah is feeling better after such horrible days this week. Rejoicing with you in his progress and continuing to pray for healing for his little body and refreshment for you!!!

You're amazing and through all of this your blog entries are CONTINUALLY uplifting to the readers!! What a witness you are for the Lord, Kate, even to those of us who already know Him!!

Love & hugs,

Joy Horton
Ohio
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May. 9, 2009 - Where there is life, there is hope...

Posted by Anonymous
With mito, and Kate correct me if I'm wrong here, a child's life is a continual up and downhilll battle - this is typical and expected in a mito child. But there is still life - and that is what counts. It may not be the same life a 'normal' child has, but God knew Noah would be different even before Noah was conceived. God gave Noah to a very special family who loves him and makes every moment of his life ultra special - because that little life will not be as long as other children's. God knows what he's doing, even who to give his precious children too.

As the nurse told you Kate (praise God for such sweet nurses!!!), giving up on Noah when he is sick would be like taking insulin away from a diabetic, or stopping dialysis on a kidney patient. Those are not extraordinary measures, and antibiotics are not extraordinary measures. They are very simple medical measures that help continue the life that God already ensured for Noah - and they help Noah enjoy his life as much as he possibly can. Although dialysis and insulin and many other medical measurements are almost instantaneous in how they work, with antibiotics it is a waiting game to see which works and how quickly (or slowly) - yes that is not fair to Noah to wait and suffer, but it is the best we humans have to offer and in the meantime, Noah has rested and has been loved up one side and down the other! No harm in that at all.

Noah does not have cancer, where often there is a point where nothing works and continuing treatment truly is selfish. I've lived through that with my mother and more recently, a close family friend. I can understand concerns of being selfish in those situations - family members often put pressure on their loved one to continue treatment. The patient suffers to keep the family happy - and that is selfishness. This is not what is happening with Noah though - Noah's condition is VERY different.

Pain and suffering come to everyone in differing degrees, although for a tiny boy like Noah it doesn't seem fair. But when we step back and look at the entire picture of Noah, it is bigger than anyone can imagine because God's hand is and has been continually at work in Noah's life, reaching out to countless people worldwide. There is a definate reason Noah is here and why he suffers, and some day all that will be gone and he will be free and in Jesus's arms just like I hope so many of my loved ones are or will be. That is the ultimate goal for everyone, isn't it? To be free and with Christ in heaven - yet we still work to keep our bodies healthy and strong, so we can continue to do the work that God put us here to accomplish for Him...Noah is no different.

The time and place when Noah is ready to leave is completely up to God. And I have no doubt that Jeff and Kate, if Noah reaches the point where decisions need to be made in that area, will allow God to take control. But until that time when Noah can't breath and his heart can't function and his organs begin to slow down and there is no hope left - until then, where there is life there is hope - because Noah's special medical needs do not inhibit the joy he has in his surroundings, his family and every moment that he is healthy enough to enjoy life.

God gives life, and He takes life when it is time. Right now, it is not the time for Noah. When it is time, Jeff and Kate and everyone else around Noah will also know it is time. Until then, the Estes family has another day to snuggle up and love Noah, to touch his hair and kiss his cheek, to help him color a picture and hold him to the window to see what is happening outside and watch the birds fly. Noah has another day to feel the wind on his cheek, the sun on his face, to play and be the little boy God made him to be, to smell LIFE and enjoy the simpliest of pleasures, and to know that he is surrounded by people who love him.

There is still enjoyment Noah's life, in every second that goes by, if only because he knows someone loves him. Noah has not crossed the threshhold of no hope - he is still lingering on the other side :)

Rebekah
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May. 9, 2009 - Untitled Comment

Posted by Robinsnest
I am so glad he's getting better!
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May. 9, 2009 - Untitled Comment

Posted by hallfamily8
Kate, I love this picture idea! That will be such a beautiful and tangible sign of prayer. :-)

I'm really sorry that someone hurt you through the words that they left. I think you did a good job responding to that.

I am so so so so so glad to read the good report on Noah. I started praising God as soon as I started reading today's entry. I've just been praying and praying for him, including when my baby nurses during the night.

Love, Dawn
www.caringbridge.org/visit/susannahall
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May. 9, 2009 - Prfaises for Noah doing better!

Posted by Anonymous
Dear Kate,
Such wonderful news that Noah is doing better. God is good. We will continue to pray for you all.
Sorry you got a not so nice comment on your blog. Remember that Noah's days were numbered, just as all of ours were numbered, before we were born, and there is nothing we can do to shorten or prolong it, against God's will. God is sovereign over all. And he has a plan and purpose for each of us. I am so glad that God chose your family to give Noah to, as you so appreciate and love him and see his value. What a sweet little guy he is!
It was wierd to see him looking like a big boy in the picture. We still call him Baby Noah at our house. We will have to change to Big Boy Noah! Praise the Lord for Noah and his life, and his family.
Bless you all.
Amy
http://insearchofnormal.blogspot.com/
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May. 9, 2009 - Untitled Comment

Posted by Anonymous
Kate,

I didn't respond to your previous post (more questions) but wanted you to know that the sweet picture of Noah sleeping just completely did me in. I cried and cried. For him and what he has to go through, and for you and what you have to go through (emotionally) and for your other children and the separations they must go through. There is almost nothing sweeter than a baby or toddler's soft round cheeks, and their long eyelashes closed in sleep, and their soft little hair, sometimes damp from sweat on their brow. I could visualize my own little man in that bed (who has recently been very sick with pneumonia) and it was just really poignant. Thanks for sharing the photos, the well written info on Noah's underlying disease and all the various symptoms he exhibits, the specific prayer requests so we can know how to pray, and most of all your heart. I am saddened that you sometimes receive comments which are critical in nature. Please know that there are THOUSANDS of people who love you as the sister in Christ that you are, and who are praying faithfully even as I type these words. To see the body of Christ in action is such an awesome blessing!

I will share with the children and we will stop and pray again for Noah and rejoice together that he seems to be turning the corner from whatever this was. "Be anxious for nothing, but in everything by prayer and petition, with thanksgiving, present your requests to God. And the peace of God which transcends all understanding will guard your hearts and your minds in Christ Jesus." Phil 4:6-7

Love and blessings,
Pam in SE MI
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May. 9, 2009 - Untitled Comment

Posted by Kristine
I'm SO happy to hear that Noah is feeling at least some relief and is hopefully on the right path to go home with you soon! :)

Wow, I'm always amazed (although I shouldn't be as I've seen this so many times on blogs) how a complete stranger feels that it is okay to make judgments about something so intimate and sacred as the life of a child. Of COURSE they are always ANONYMOUS. Gotta love the bravado behind that one. It is scary that someone thinks they know better than an involved, loving mother. Although it does sound like this person if hurting and likely just transfered her life circumstances and/or past onto someone else.

Zebra photo on its way! :)

Kristine
leeleenews.blogspot.com
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May. 9, 2009 - You know best

Posted by Anonymous
I truly believe you know what is best for your son. You are right, he is sick and will face many more hurdles in the future, but he loves life! He gets so much pleasure from so many things. God gave him to you for a reason. It was not an accident. Please continue to trust God for Noah's care and treatment, and He will guide you.
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May. 9, 2009 - Untitled Comment

Posted by Anonymous
You are a better Christian mommy than I am to be so kind with the negative blogger. I lost a daughter with congenital pulmonary lymphangiectasis in 1996 and my mommy's heart broke many times watching her suffer while she was here on earth. It is difficult enough at times to remain positive with the enemy constantly snapping at our heals with doubt, despair, and confusion; especially when he 'aims' at us using another Christian! We should all learn as a little child...if you can't say something nice, then don't say anything at all. Thanks be to our Almighty God he sends us many precious ones as His hands, feet, and mouth to encourage, care for, and lift us up! Much love and prayers from the Krauss family.

Laryssa-5
Charleston, Missouri
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May. 9, 2009 - Joyful, Joyful!!

Posted by Anonymous
Oh Kate, what power prayer has in our HUGE petitions just as with our small. Keep your heart in sync with God, lift up the exact prayer you request, let none go unspoken. You and Jeff have proven your submission to the Lords plans for Noah's life and your own...I know that our family has been truly blessed by Noah and his full determination to enjoy this life with his family and friends.

Do look for a photograph from us; we would be honored to be included with such a mighty team of prayer warriors.

Praying much peace, patience and wisdom for all of those caring for your --- our --- sweet Noah.

I've been reading your blog now for about 2 years and I wished we lived closer, I'd love to come give you and that sweet baby boy a hug.

Blessings,
Shawn Martin & family
Godley, TX
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May. 9, 2009 - Praying!

Posted by Marilyn in CO
I am sooooo happy to hear Noah is doing better! Know that we are still praying, praying, praying that he will be able to go back home soon! God bless you all! I will try to get a picture in the mail soon!

In Him,
Marilyn Long & family

C.O.L.E. (Caring Openly, Loving Eternally) Prayer Team
www.colesfoundation.com
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May. 9, 2009 - Untitled Comment

Posted by Sarah
Hi Kate,

Just to let you know that I am praying for sweet Noah.
Also, Zinc Oxide Cream, it has to have Zinc Oxide 40% w/w or else it doesn't work for severe rashes. This is the only thing that ever worked with diaper rashes that I have seen, from the pharmacy anyhow.

This is how I have used it so it works. Before putting any cream on it is baby powder to get rid of any excess moisture and then gently pat on thick Zinc Oxide cream and sometimes I have put a thick slab of vaseline on top for extra protection until the next change.

The 40% Zinc Oxide is the secret and what heals the rash, don't stand for anything less.

God bless,
Sarah

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May. 9, 2009 - Diaper Rash

Posted by Anonymous
Incidentally, the Zinc Oxide 40% will take 80% of the rash away over night! This is no exaggeration. I hope someone will go out and buy some for you, if I were there I'd get you several jars and urge you to use it.

God bless,
Sarah

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May. 9, 2009 - Diaper Rash

Posted by Sarah
Incidentally, the Zinc Oxide 40% will take 80% of the rash away over night! This is no exaggeration. I hope someone will go out and buy some for you, if I were there I'd get you several jars and urge you to use it.

God bless,
Sarah

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May. 9, 2009 - Untitled Comment

Posted by Anonymous
I'm so glad that Noah is improving. I'm also so sad that someone(meaning well, I'm sure) left those comments. You are very right in your thinking and an encouragement to us all. It may sound weird but knowing your struggles puts my childrens health struggles in perspective. God Bless you all and I'm praying he does a Noah turn around and is home very soon.
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May. 9, 2009 - Love, love and love

Posted by Tawdra
Kate, the relief we felt today reading this news! I know he's a long way from A-ok, but this is a move in the right direction. . .praise God from Whom All Blessings Flow!! Please do not allow the thoughtless comments of one cause you to doubt what you know is true. Our prayers continue without ceasing down here in Florida, and we will be sending a picture for the Prayer Wall soon--what a great idea!! Love from the Kandles in central FL
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May. 9, 2009 - Diaper Rash

Posted by Anonymous
I know you've received lots of advice here, but couldn't keep from posting my old fav. It is the liquid indigestion medicine, something with simethicon (or silicon based) in it. I put it on with a cotton ball and then used a hair dryer on the lowest setting to dry it....very healing and they liked the feeling of the air blowing down there!! :)

God bless your family!

lisa zymbaluk. / colorado
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May. 9, 2009 - praying in Maine and grateful for you

Posted by Anonymous
Just wanted to let you know that we are praying here in Maine for Noah and your family. He has been a part of our lives since the beginning it seems! Our Sawyer is just a month older than Noah. They were due at about the same time, but we had to deliver Sawyer a month early due to my Rh sensitization. So, watching Sawyer and hearing Noah's story, make it bittersweet for us.

I am so blessed by you and grateful for your stand. We were saddened by the post you mentioned today and found it hard not to be angry with the writer. You handled it beautifully and had us all in tears.

Love, the Merrill Family
Dana, Vicki, Brenna, Logan, Kaelie, Mariah, Mackenzie, Sawyer and Delaney
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May. 9, 2009 - Untitled Comment

Posted by Connie Post
I just want to make a comment to the blogger referenced in the blog today in case they may read these comments. I agree with Kate, but want you to know that I am truly sorry for the loss of your precious child. It is an unthinkable grief that few of us know nothing about. I have prayed for you today that in the midst of your mourning and grief that the God of all comfort will bind up your broken heart. I recently lost a baby during a pregnancy. I know our stories are nothing alike, but I took great comfort in the scriptural promises I found in the book, "Safe in the Arms of God" by John MacArthur. Perhaps it could bring some comfort to you as well as you picture the magesty, peace, joy and lack of suffering that your little one now experiences in the arms of a loving God. I don't presume to think that a simple book will heal your hurts, but perhaps as it reveals the truth of God's unfailing love, it can help you take one more step on the journey of healing. Blessings to you dear one. May your joy be made complete as God holds you close to his heart.

Connie Post
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May. 9, 2009 - Noah's Getting Better!

Posted by Carla
Praise the Lord for this wonderful report!!! I know your sweet angel is still very, very sick, but this is great news. I have to admit, I approached the update with fear and trepidation. Your opening words were such a joy to behold!!! I will keep praying. God has something very special for Noah, I'm sure of it. He is a lesson in strength for every one of us.
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May. 9, 2009 - prayers continue

Posted by Liz in OK

Oh, Kate, know in your heart that it is never selfish to fully enjoy the marvelous & manifold blessings of our Lord & Savior. God has given you this boy, for as many days as you have him, to enjoy him well. As a blessing to him, as a blessing to you, as a means of coming to know the heart of Christ more & more.

1 Tim 6:17-19
Instruct those who are rich in this present world not to be conceited or to fix their hope on the uncertainty of riches, but on God, who richly supplies us with all things to enjoy.
Instruct them to do good, to be rich in good works, to be generous and ready to share,
storing up for themselves the treasure of a good foundation for the future, so that they may take hold of that which is life indeed.

You're doing well, dear sister, in accepting what God has blessed you with & in pointing toward Christ in your dealings with those blessings. May He bless you & Noah & Jeff & all the other kids abundantly this weekend!


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May. 9, 2009 - CONNIE, thanks for your post

Posted by Carol-n-Texas
Connie, I just wanted to thank you for posting what you did to that other mom who had lost a child, and then tried to tell Kate she should give up on Noah. You not only reached out to her, your post touched me because my 7 year old son died last year and I am still grieving for him. Although I know he's in heaven and one day I will see him again, it is still hard to live everyday without his smile, his humor, his amazing personality, his incredible love and his very presence in our home. I looked up that book on Amazon and it was only $11.00 and looks like a very good book..I am ordering a copy for myself. So thanks Connie for being so thoughtful and reaching out to the other anonymous mom.

KATE, you are AMAZING. I loved reading your update and your incredibly positive attitude and just cried when I got to the end of that paragraph talking about telling Noah to fly to the ONE who loves him even more than we do....Sigh! You truly have the right prespective on everything and that one nurse of yours said it exactly right too. You are a warrior woman of God and have truly ministered to so many of us in the midst of your struggle and pain.

That prayer wall sounds incredible, I've been looking through all our online photos today, all our zoo pics and trying to find which one I want to print and send! My 4 year old son is totally into gorillas, so most of the carrousel pics have him on one or a cheetah, but I may still send it anyway. I am trying to at least have one with a zebra border going around it for that sweet Noah to enjoy!

Proud of you, lady! HAPPY MOTHER'S DAY from one mom to another!

Carol
Proud mom of 6 children
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May. 9, 2009 - Praise God!

Posted by Anonymous
I was ever so happy to read your latest post. Praise God who's in control of EVERYTHING! We'll keep on praying for Noah and for the whole family.

Happy mothers' day Kate!

Tuija from Brazil
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May. 9, 2009 - Praying

Posted by Angel
Kate,
I am praying, praying for the continued healing God is providing. I love your map idea - you are such an awesome homeschooling mommy;)! We will send a picture.

Another diaper rash suggestion...we always apply the cream (we always used Desitin, the stinky fish-oil one) and then dusted it with cornstarch baby powder. I always equate it to cooking a cake. You put flour on to keep the grease in place, same analogy. The powder seems to keep the diaper cream on so that it doesn't get rubbed off on the diaper. It always seems to be the cure for us when things get really bad. Even better than applying super thick cream.
You are all in are daily thoughts.
Love,
Angel Seurkamp
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May. 9, 2009 - Untitled Comment

Posted by Anonymous
Dear Katie,
PTL that Noah is improving. We'll continue to pray for him and all of you. We LOVE the idea of a prayer warrior's wall for him. Count us in.
Love,
Ruth and the Hammond bunch
Psalm 121
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May. 10, 2009 - Robin in OHIO

Posted by Anonymous
I am doing the happy PRAISE DANCE GO NOAH!!! GO KATE AND JEFF AND THE KIDDOS!!! Still Praying and holding you all up...Will get onto the PROJECT ZEBRA!!! How so so so very SHOCKED at the bloggers comments...My darling husband has severe,severe asthma but I would never NOT try to save him or comfort him, or help him breath in anyway I can yes his quality of life is "different" for others and effects our life but to say that to someone...LET ALONE A PARENT OF A CHILD whi is ill just FLOORS ME!!! I will pray for them!!! Only our CREATOR KNOWS OUR time....here on earth...and we are not to judge and I do not think OUR LORD gives us the ability to treat illness not to use it our LORD SUFFERED and still suffers for our mistakes....GOD BLESS YOU KATE AND JEFF and for humbly answering this blogger in such a positive GOD driven way...Praying Robin, Miranda and the rest of the Immel's
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May. 10, 2009 - diaper rash

Posted by a prayer friend
I used to use a product called 'Bag Balm'. It has lanolin and is used for cows udders when they get sores or'step on' and hurt themselves. my friend who gave it to me had it checked out by a pharmacist when it was given to her. It cleared my daughter's rash in less than 12 hours. She had thrush really bad when we got her at 3 weeks. I used it on her after that exclusively because she was so tender. Use a little, use a lot it doesn't matter. but it WORKS

You can get it at farm supply stores and some of those gift shops 'for the folks that have everything'. It came in a green tin about 3 inches square.
God Bless
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May. 10, 2009 - Untitled Comment

Posted by narnialover95
I'm so glad that he's doing better! I'm praying every day for him.
Blessings,
Taylor
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May. 10, 2009 - Untitled Comment

Posted by Anonymous
I'm so glad that Noah is turning the corner. We are continuing to pray that he will be home soon.

I also want to mention--- what a gracious way to handle a very inappropriate (but probably well-intentioned) blog comment. You are an inspiration to me!!
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May. 10, 2009 - Praise God!

Posted by LarabaK
I am so thankful Noah is doing better!

Thanks also for that difficult section in the blog about Noah and choosing to treat. I didn't write the comment you mentioned and definitely wasn't thinking that you were selfish to treat, but I have wondered sometimes why the Lord lets Noah suffer so much. It seems like (in my wisdom) that it would be better to make his life easier, or for God to take him home. Truth is, that is not your decision to make, or mine, or anyone's but the Lord's. And it is so encouraging for you to write about the joys of his young life, that he is a joyful little guy. I keep remembering that God's ways are not our ways, and that His perspective is eternal whereas ours is so very limited by time and space. God is using Noah, and all of you, in a powerful way. You are a dramatic testimony of faithfulness to God in so many ways. And you are a happy family in the midst of all the trials you face, trials that would knock me for a loop (well, I know God would help us get through them if we ever faced such trials.)

Praying that today Noah will feel better and better, and that you would get some answers from the doctors.

God bless, Laraba
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May. 10, 2009 - Praise the Lord!

Posted by LordsHandmaiden
Yea God! Yea Noah! We are SO happy to hear that he is doing better! We will continue to pray for Noah and your family.

I'm so sorry you have to deal with insensitive comments on top of everything else. I appreciate the way you handled it, Kate.

Reading the original comment, I don't feel the person meant any harm, though certainly some was inflicted nonetheless. In our haste to comfort Kate, let's not trample the tender emotions of another parent who has lost a child. I, too, have a baby who's gone Home before me. It's intensely painful and personal. Though this person is listed on this page as "anonymous", s/he is not anonymous to God. We are talking about another human being here who has suffered immensely. Sometimes, typing on the computer, it's easy to forget we're talking about real people with real feelings. If the person who posted the original comment is still reading, I want you to know that my hearts breaks for your loss and I pray you find healing and comfort in the arms of Jesus, though it's a long and slow process. I have also read the book "Safe in the Arms of God" that was mentioned before and I highly recommend it. I also read "Grieving the Child I Never Knew", since my son died before he was born. I highly recommend this to others too.

Kate, I am encouraged and fortified by all that God is doing through you and your precious family. Your honest sharing gives me the courage and desire to continue to "fight the good fight". Thank you for your willingness to be open and share your joys, your struggles, your sorrow, your smiles, your fears, and most of all, your faith in a God who is so much bigger than we can ever imagine.

Still Praying,
Elizabeth
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May. 10, 2009 - Noah

Posted by Anonymous
I continue to lift Noah and your entire family up in prayer. It sounds like he is definitely a fighter and will make it through yet another bump in the road. May God continue tl bless and keep you in the palm of His hand.

Happy Mother's Day to you.

Prayerfully,

COLE'S Prayer Team
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May. 12, 2009 - Carol - in Texas

Posted by Connie Post
Carol,

I'm so sorry for your loss and hope that the book will be a great encouragement to your mother's heart. Blessings to you! Thanks for sharing with me

Connie Post
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About Me

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.

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