Our Quiverfull
Jul. 3, 2007
New to our blog? Read This First!!

Posted in Noah Updates

NEW UPDATE (AUGUST 2008) ADDED AT THE BOTTOM!


People have been requesting pictures of Noah and our family so we put this slideshow together.  Scroll down past the images for the rest of the message. 

This post is going to be a little bit different, and our long-time blog readers may even want to skip it.  We often get emails from readers who are new to our blog, and who find that reading a new post is like starting a book in the middle.  Some enjoy going back and reading lots of old posts to catch up, but many others just don’t have time.  In this post, I am going to try to summarize Noah’s story and what has been going on in our lives.  I’ll be adding it to the links section on the right so that new visitors can get to this post easily whenever they find our post, and I will edit/update this post to reflect major changes as they occur.  We hope this will simplify things for our many new readers.

 

We are Kate and Jeff Estes, and we take turns writing this blog.  I (Kate) do most of the writing, but Jeff does the funniest writing!  We have seven beautiful children ranging in age from 14 down to Baby Noah who will be one year old on August 10.  We won’t tell you how old we are - LOL.  We have five boys and two girls and they are the joy of our lives.  Jeff has a full time job working as an Organization Development Manager of an iron foundry.  The foundry melts iron to make parts for cars and other machines, and Jeff is in charge of all of the training, teaching, and personal development of all of the employees.  He is an incredible teacher and very good at his job.  (Proud wife bragging about wonderfully gifted husband!)

 

Jeff and I also own a homeschool supply company called Hands and Hearts.  You can see our home on the web at www.handsandhearts.com .  We develop and create hands-on living history project kits, and we also sell a few hundred other very carefully chosen homeschool resources.  Our business also sponsors a Yahoo group and a newsletter.  Jeff and I both work hard with our business along with some great employees who do most of the day-to-day work.  We also have several homeschool graduates, students, and moms who work for us – they make a wonderful team and they are like family to us.

 

We started this blog as a general family/homeschooling blog, but within days of starting the blog little Noah became gravely ill and he has become the focus of the blog.  I hope that one day there will be more homeschool articles, recipes, and funny family stories than there are prayer requests, but right now we are overwhelmingly thankful that this blog has given us a way to update friends and family about Noah’s complex and ever-changing needs.

 

Noah came into this world with a bang on August 10, 2006.  When Noah was a few months old, he began a serious and rapid decline in his health.  Since March, 2007 he has been hospitalized 5 times and has had two surgeries.  He cannot and will not take anything by mouth except to nurse, but because he is very weak physically he is not capable of nursing enough even to maintain his hydration.  In the middle of May, 2007 he had surgery to insert a feeding tube (g-tube) so that he can receive nourishment directly into his stomach.  He tolerated the surgery well but does not tolerate feeding well.  Most children with g-tubes are fed in a way that mimics normal baby feedings.  They receive six 10 oz. “meals” of formula several times a day over a period of 10 minutes or so like a bottle-fed baby would.  This is called bolus feeding.  Noah is completely unable to tolerate bolus feeding.  He is attached to a feeding pump 24 hours a day and is fed a very special ($25 dollars a day worth of special!) formula continuously at a rate equal to 5 oz every 4 hours.  Even though our insurance isn’t paying for his formula and feeding tube expenses, we are blessed in that we are currently receiving some financial assistance for these items.  We don’t know how long the funding will last, so funding for the formula is an ongoing prayer request.  It is a challenge to manage a baby who is always attached to a pump!  The pump looks a lot like the sort of pump used for an I.V. and his milk is stored in a bag that looks like an I.V. bag.  The bag, pump and tubing fit into a special bag that we have to pick up every time we pick him up.  It is run by battery power when he is awake and plugged in when he sleeps.  We are blessed that he really doesn’t ever try to pull out his pump, but we have snagged in things several times and snapped the tubing.  That is always a messy disaster!! 

 

During the first 4-5 weeks on the pump, Noah was gaining weight beautifully with his feeding pump.  Before he got the pump he was truly emaciated and you could see most of the bones in his body.  It was heartbreaking.  He started to fill out immediately after his surgery and was gaining more than a pound a week!  In the past couple of weeks his weight gain has nearly stopped, so that is one of our primary concerns right now.  If Noah has a mitochondrial defect (more about that below) it could explain the weight gain issues.

 

Noah is by far the easiest and most pleasant baby we have ever had.  He brings tremendous joy to our family.  He loves everyone he meets and smiles all of the time.  He is very generous with his slobbery kisses.  Even though he has had dozens of  I.V. placements and over 100 blood draws, he is never resentful or fearful toward his doctors and nurses.  In fact, he has a reputation at three hospitals and several doctors’ offices as a world class flirt – and he is so good at it that everyone with whom he flirts is convinced that he or she is his personal favorite.  His affectionate personality is made more powerful by his huge blue eyes and fluffy blond hair with a big cowlick in front!

 

Noah has significant motor delays.  At almost 11 months he cannot roll over or creep.  He is just starting to briefly maintain a sitting position when placed in one.  He is a very sleepy baby and needs to nap for a few hours after being awake for about an hour, even though he may not do more than cuddle and nurse and chew a toy during his awake time.  He gets sick easily and when he gets sick he gets extremely sick.  He is allergic to five different families of antibiotics, so we have to work hard to keep him healthy.  When he nurses or sleeps he sweats so heavily that his sweat will drip off my arm or soak a folded towel.  If he sleeps on a dark sheet we can see where he leaves a raised ring of evaporated salt and other minerals from all of his perspiration.  He has some other G.I. issues that need further testing and he may need more surgery to correct some of them.

 

Extensive testing has ruled out a lot of potential diagnoses.   He doesn’t have cystic fibrosis.  A recent trip to MUSC Children’s Hospital in Charleston has ruled out any serious cardiac issues (he does have a small heart defect but it isn’t causing these symptoms).  He doesn’t have a chromosomal abnormality.  He is strongly suspected of having a mitochondrial disease and his geneticist is arranging for us to take him to Emory in Atlanta to be tested for mitochondrial defects.  The test requires yet another surgery under general anesthesia.  A large muscle biopsy will be taken from his thigh.  This isn’t a tiny sample.  The incision will be more than half the length of his thigh.  Some of his doctors have suspected a mitochondrial defect from the beginning, but because the test is so invasive, part of the diagnostic process involves ruling out every other possibility before doing the biopsy.  There are many different mitochondrial diseases and they vary in severity, but they are all terminal and degenerative.  Some just move faster than others.  If Noah does have a mitochondrial defect, the doctors might be able to narrow it down to a specific syndrome with a known prognosis, or they might not.  If you are very interested in mitochondrial diseases, a Google search will yield lots of information.  I won’t take up room here unless Noah is eventually diagnosed with one.

 

Of course, with six brothers and sisters, Noah certainly doesn’t exist in a vacuum!  Recently things have been even busier than usual at our house, and there are several ongoing dramas that are being regularly updated on our blog.  When they are resolved, I will probably just remove these stories from this overview post, but for our new readers who may wonder about the stories behind the updates, here goes! 

 

Our four year old daughter, Sarah, was recently attacked by a squirrel that is believed to have been rabid.  It charged her in our yard (she says it tackled her!), climbed up her leg, dug its claws into her little hand, and bit her fingers to the bone repeatedly.  Officials were unable to catch the squirrel for testing but are fairly certain it was rabid because of its behavior (attacking Sarah, attacking but failing to bite our ten year old, running into things, biting itself, etc.)  As a result, she is currently undergoing the rabies series which has been VERY hard for her.  Not only are the shots excruciating painful, but she has had some adverse reactions to the vaccine.  One of the reactions earned her a night in the E.R. because she was delusional, hallucinating, biting herself, etc.  We are enormously thankful that the other episodes have been far milder. 

 

A couple of weeks ago our ten year old son Matthew slipped and badly sprained his ankle and probably suffered a hairline fracture of his fibula right above his ankle.  So far he is healing miraculously well.

 

The large 15 passenger “big red van” that our family needs for transportation is currently gravely ill.  It may be terminally ill.  Because there was no earthly way for us to afford the repairs needed to make it drivable again, my hard-working husband accepted the offer of a friend to help him learn to fix it himself.  They have been working SO hard on this, but to no avail so far.  Our friend is a perfect genius with cars and knows “how” to fix our van, but because it is so old (1993), they are running into parts that have literally rusted into place.  We are without family transportation at this time and are earnestly praying that Jeff and his friend will be able to fix our poor old van!  When the biggest issues are fixed so we can drive again, we will need to pray about our future transportation needs.  We bought this very old van for cash about a year ago because we needed something that would hold our entire family.  Since we live in a small town and I seldom drive more than 5 miles to go anywhere, the van has been great for us.  We obviously never anticipated the astounding number of out-of town trips we have had to make for Noah’s doctors’ visits and hospitalizations.  We have just asked too much from our faithful red van!  We are thankful that God is allowing Jeff to work on repairing it at a price we can manage, and know that God will give us wisdom about what to do about transportation in the future.

 

I think those are all of the main, recurring things that currently appear on our blog.  The other thing you will see in nearly every post is a blessing list.  Jeff and I truly embrace James 1:2-4, which says “My brethren, count it all joy when ye fall into divers temptations; knowing this, that the trying of your faith worketh patience.  But let patience have her perfect work, that ye may be perfect and entire, wanting nothing.”  Those verses and other precious verses in James became very meaningful to us during my difficult pregnancy.  The fact that Jeff was teaching through the book of James at our church (did I mention that he is the best teacher in the universe??!!!) was such a blessing and encouragement to both of us – so much so that we named our baby Noah James Joseph.  The phrase “count it all joy” has become like a family catch phrase, and shortly after we started this blog we decided to end each post by literally counting our joys and blessings.  This is a very real thing for us and it doesn’t always “look” ultra spiritual or pious – in fact, Snickers bars and the Red Sox have appeared in more than one blessing list!  We are just ordinary people who serve an extraordinary God and want everyone to know all of the deep and meaningful AND fun and silly ways He is blessing us every single day.  If life ever calms down enough for me to start posting mundane things like recipes or homeschooling tips, I can’t promise that I’ll list ten blessings along with my chocolate cake recipe, but I do know that right now in these trying days that I need to very intentionally keep my focus on all that is so good in our lives.

 

I hope this loooong post is a help to those of you who have wondered about some of the things you have read here.  We want to keep this updated and hope that it will continue to be a blessing to our readers.  If anyone still has any questions after reading this, please leave your question in the comments section (or email us) and we will promptly update this post to reflect those questions. 

 

Love, Kate and Jeff and the children

 

AUGUST, 2008 UPDATE

 
SOOO much has happened and changed in Noah’s life since I wrote the above post.  I haven’t been as faithful as I intended in terms of keeping this part of the blog current, but I’ll try to bring you up to speed as briefly as possible.

 
As of today, Noah is just 5 days away from his second birthday!  He was hospitalized not long after I wrote the above post.  The hospitalization was meant to have been for minor surgery to convert his g-tube to a gj-tube, but it was the start of very grave complications for Noah.  That surgery was a failure and Noah ended up staying in the hospital for over six weeks, during which time he had MAJOR abdominal surgery to correct severe birth defects in his gut (which had gone undiagnosed until then).  He became septic twice, had two broviacs (central lines) placed, was medflighted to CHOP in Philadelphia, and was started on TPN.  TPN is a form of nutrition that goes into the bloodstream through a central line.  It contains fats (lipids), carbs, proteins, vitamins, etc.  It saved Noah’s life but it is also slowly destroying is liver.  He can’t live without it, but he can’t live for long with it either.  The TPN was started because his ability to be fed  by g-tube was actually decreased rather than improved after surgery.  The discharge plan was to gradually increase tube feedings and decrease the TPN, but not long after discharge Noah became unable to tolerate any g-tube feedings at all.  He is now completely dependant on TPN for his nutrition and hydration.  He is hooked up to an IV for 14 hours each day to receive his TPN.

 
After that memorable hospitalization he continued to endure repeated hospitalizations, surgeries, and four more episodes of sepsis.  He was rarely home and spent most of the rest of the year in the hospital including most of our birthdays and even Christmas.  We nearly lost him more than once, but this amazing child just kept fighting.

 
On January 29, 2008 we were blessed with the birth of our 8th child, Mary Faith Adele Estes.  Noah had been very gravely ill and in the hospital until less than 72 hours before I went into labor - we were starting to think I would give birth in the hospital with Noah!

 
Since Mary Faith was born, Noah has stabilized more than we ever dreamed he would.  In June we went to Atlanta for a consultation with a specialist and Noah ended up getting sick and being admitted to Scottish Rite for almost two weeks, but this is the only time he has been inpatient since Mary Faith’s birth!  This time that he has spent at home has been a healing and refreshing time for all of us.  You can’t imagine how wonderful it has been to all be together as a family for all this time.  (When Noah is admitted, it is to a hospital an hour and a half from home.)  Noah has truly blossomed and is walking (!!), saying a number of words, becoming proficient in sign language, playing with toys, and loving life.  He is the most joyful person I have ever met and is truly a delight to all of us.

 
Unfortunately, the fact that he is stable doesn’t mean that he is getting better.  Geneticists in Philly found that Noah has two defects in his mitochondrial DNA and he is now considered to have mitochondrial disease.  There is no treatment and there is no cure.  This is a progressive disease that is probably terminal.  In June Noah had a muscle biopsy (his second) in the hopes that we would learn more about how his mitochondria are being affected by this disease.  He has developed dilated cardiomyopathy which is being managed well with medication.  He is in partial bone marrow failure which means he needs regular transfusions to stay alive.  His immune system isn’t functioning well so he receives monthly infusions of IVIG, a human blood product that contains immune antibodies.  If he weren’t getting the IVIG he probably wouldn’t be with us today.  While Noah is now able and willing to eat, he only eats a teeny amount of food and he doesn’t seem to absorb nutrition from it at all.  He is also not absorbing the TPN well and seems to struggle to stay hydrated and nourished.  He has frequent episodes of pain that we can’t identify.  He can’t tell us what is wrong and all we can do is rock him and love him until he feels better.

 

In spite of all this, Noah has the most amazing spirit.  He is considered very medically fragile, but he doesn’t look it!  He is a sturdy, beautiful toddler who has a way of stealing hearts everywhere he goes!  We are beyond blessed to be his parents.  To see some current pictures of Noah, click here!

 
Other changes in our family since the above update include . . .

 
1.  We said goodbye to the Big Red Van and are now the proud owners of the Big White Van.    Unfortunately the Big White Van took a page from the red van’s playbook and is giving us a run for our money right now.  The big sliding door was damaged when it was opened on a steep hill and now it won’t open . .  . ugh.  At least it runs well!!

2.  Sarah has completely recovered from the rabid squirrel incident but continue to be Nature Challenged.  Since I posted last she has had a number of other nature-related tragedies including getting into a nest of ground bees, being head-butted by a cow and sent flying, and others.  We’re thinking of not letting her go outside anymore until she’s thirty. 

3.  Jeff lost his job the first week of May.  It was a career level upper management job, and he had always had fantastic performance reviews and consistent promotions, but the position was eliminated in a round of cutbacks.  He has not since found employment, but we are waiting on God’s timing and being blessed by God’s hand of provision.  Jeff was only given four weeks of severance pay, but we have continued to see our every need met.  We’ve even been blessed with luxuries like the occasional Starbucks card or meal out!  He is a wonderful man and a hard worker and is doing all he can to both find a job and to build our homeschool business (www.handsandhearts.com ) to the point where it could perhaps fully support us.

4.  Of course, having our newest little girl is probably the biggest change.  Mary Faith is a true delight and joy.  She is a very petite little thing but seems to be totally healthy.  She is unbelievably happy and content.  We are so blessed to have her in our family, and Noah really adores her.

5.  We have learned and grown in ways that we never dreamed possible.  God has shown up over and over as He has drawn us into His arms, loved us, and provided for us.  None of this has been easy, but it has been beautiful.

 
Blessings,

Kate

 


Post A Comment! Send to a Friend!

Comments

Jul. 3, 2007 - Love the slide show

Posted by Kathleen


Dear Kate, peace and joy. I love being able to finally see allll of your family. The slide show is great. Keeping you and yours in prayer. I know how long it takes to be able to communicate through the 'net, and really appreciate your dedication to keeping us updated.


Permanent Link


Jul. 3, 2007 - Thanks for posting the slide show!

Posted by Maleah


Noah is such a happy, peaceful looking baby. What a blessing.


Permanent Link


Jul. 3, 2007 - Thank you

Posted by Anonymous


Thank you for the synopsis of your blog. Even though we have been following for awhile now, we still enjoyed the photos (Our oldest daughter thinks that she met you at ICHE in May! She and our second daughter were helping my husband at our booth one aisle over from where you were.) and hearing other tidbits of your story surrounding Noah that we have missed.

Thanks for the reminder to count it all joy. It truly is a command that we need to heed during the rough spots.

Oh we also have a 1993 big red van that we have dubbed "Behemoth" and have had our share of repairs with it over the past year that we have had it. It is still running, thankfully. May the Lord truly provide for your family.

Blessings and prayers,
Theresa


Permanent Link


Jul. 3, 2007 - Thanks

Posted by Anonymous


Thank you so much for the quick overview of what is happening in your lives. I am new to your blog, although I was one of those read a lot past posts to get the information:) I really enjoy reading about your family and I have added you to our prayer list. Thank you for listing your blessings...somedays Snickers are the biggest blessing ever.
Sincerely,
Sandra in Phx
PS~GO RED SOX! (Despite the fact that I actually married a Yankees fan...oh my...what was I thinking?! LOL)


Permanent Link


Jul. 3, 2007 - Photos

Posted by berrypatch


I'm so glad you added the slide show, Kate! Now I know what you all look like! :-) I love putting faces to names.


Permanent Link


Jul. 3, 2007 - Thank You!

Posted by aaronamber


Hello!
I just wanted to send a comment saying that I love your blog. I cry and Praise God right along with you! Thanks for posting the pictures so that I can picture your fine family when I pray for you guys!
I love that you count blessings...


Permanent Link


Jul. 3, 2007 - Kate, I loved the slide show!

Posted by Tami


Thank you for posting the slide show and synopsis of what is going on with your family. We serve an AMAZING GOD, and He has given you an AMAZING family.

Love, Tami


Permanent Link


Jul. 3, 2007 - What a sweetie!

Posted by Andrea


Thank you for posting pictures! Your Noah is such a doll! We're praying for him every day..thanks for the update on his condition, and on his sister and brother too.
My Obie is only a month older than Noah..and I've caught him sleeping like that too! (with his legs out in front and laying over them) :o)


Permanent Link


Jul. 5, 2007 - THANK YOU

Posted by Anonymous


This is the first time I have ever read your post and I wanted to say thank you. I have 6 kids, 10 and under , and sometimes I forget what a blessing they are and how blessed I am. Thank you for reminding me. I will be praying for you and your family.


Permanent Link


Jul. 5, 2007 - Thanks for the Slide show

Posted by Anonymous


Kate, Jeff and Kids,
Thanks for posting the slide show. I stop by and read your posts periodically. Glad to see who I'm reading about. I also have my kids in Children's Church praying for Noah and the family twice a week. They now ask how he's doing! Little Noah has some pretty awesome 6-9 year old prayer warriors praying for his healing! And they're praying for comfort for the family. My family and I pray for ya'll daily. May our Father continue to bless you beyond your wildest expectations or dreams. Shalom, Spitfire


Permanent Link


Jul. 5, 2007 - Untitled Comment

Posted by momonajourney


I was a member of your notebooking group for a year or 2 and remember praying for you when you were pregnant with Noah. I was pregnant at the same time and our daughter was born by c-section on August 9th.
Someone posted a link to your story, so I've been reading here today. I'm sorry to hear about the difficult time little Noah has had. I will sure be praying for him and your entire family.
Blessings to you all.


Permanent Link


Jul. 5, 2007 - Thank you

Posted by Anonymous


for sharing your story. My little guy has some issues similar to Noah's. At 18 months, he doesn't sit, has meds for (controlled) myoclonic seizures, and he's only just started eating three meals of pureed food a day--nursing still figures heavily for him. I think there's something about the mama comfort that is extra special to little ones who have endured much poking and procedures.

I am much encouraged, reading here. Thank you. Come over sometime (when you have a spare minute-ha!): www.duramater.blogspot.com/

Carrie


Permanent Link


Jul. 5, 2007 - The Lord is with Noah

Posted by Laurel


Hello! Hello!

This is the first time I have seen your blog, but could relate to you in many ways.

I am the homeschooling mother of 10 biological children (currently in the process of adopting 4 more from Africa). We, too, drive a BIG red van. :)

Two years ago, my 3 year old son was in a coma for a week (and the hospital for 3 weeks), with bacterial meningitis. We knew that he was very close to death and that the Lord worked an amazing miracle during his time there. However, it wasn't until 2 weeks ago that we knew how close he actually was.

Now 5, my son asked, "When will I go to heaven?" I responded, "When ever God decides to take you there." To which Elijah replied, "God took me to heaven 2 times, but then he let me come home." I asked if he had talked to Jesus while in the hospital and he said, "Yes. Twice." I asked if he had seen Jesus, and he said, "Yes. Two times." I asked what Jesus looked like and he said, "White."

We knew that Elijah was close to death, but we did not know that he actually stood at heaven's gates, twice. We are so thankful that the Lord "let him come home."

I believe that the Lord has allowed Noah to "come home" ... that He has a great plan for Noah's life ... and that you will be amazed when he gets older as you see God working out His purpose for Noah's life.

May your family be blessed!!!


Permanent Link


Jul. 5, 2007 - Noah

Posted by Anonymous


Thank you for being a witness by counting your blessings in this difficult time. You have such a tremendous blessing in your children and I am so glad that Noah has them praying for him. We will continue to pray for you all in our homeschool family. I feel compelled to let you know that I can give you info. on a product that I believe could help Noah. I have seen it help many, my kids, other infants, my severe kidney problems-gone. No pressure, though. We will continue to PRAY. God bless you!

J-


Permanent Link


Jul. 5, 2007 - What a story!!!

Posted by Suzanne


And what a great God we have!! Thank you for posting this long entry, as this is *my* first time here... or first in many months. (I'm not sure. I *may* have been to your blog before Noah started having so many problems.) I pray that God will continue to help you see the joys amidst the suffering and confusion.


Permanent Link


Jul. 5, 2007 - Untitled Comment

Posted by Melanie


Hi -


I found you blog through a rabbit trail while reading my RSS feed today. Your story reminds me of the daughter of another blogger whose blog I keep up with:

http://www.especiallyheather.com/emma/

Her daughter has a mitochondial myopathy, wasn't expected to even be born alive, then wasn't expected to make it very long, has ended up with a heart transplant and despite her diagnosis is almost 7 years old! Maybe her story can be an inspiration to you and give you hope. :-)

May God continue to bless your family.


Permanent Link


Jul. 5, 2007 - Untitled Comment

Posted by Anonymous


Kate & Jeff

I received this email from a friend, as I was reading about Noah my heart is sick for your family. As I know God will protect all of you through this, I want to offer a suggestion. Has anyone ever talked to you about Chiropractic? If you have not explored this option of health care, let me explain that chiropractors make sure the bones in the spine are moving properly and none of them are "stuck". If any of the spinal bones are "stuck" this is called a subluxation or a bone out of place putting pressure on a nerve. Since the spine collumn houses the neverous system which controls every cell, tissue, and organ in your body it is very important to take care of it or the body will presesnt sickness and disease. My husband is a chiropractor and we have seen many miracles through chiropractic, at times when people think there is no other hope. If you haven't expored this avenue of healthcare, please contact someone in your area for more information. You may also contact us, as we can find help for you. This may be in your best interest for Noah!

Thanks for your time and our family will be praying for yours.
Carrie Nafziger
dr.randy@nafzigerchiro.com


Permanent Link


Jul. 5, 2007 - Blessings to you!

Posted by whirlwind


Lifting Noah, your family and all your needs up. May God continue to strengthen you -- your attitude towards all of this is glorifying Him and a humbling encouragement to all of us.

Let your little girl know that I'll be praying for the strength to endure the rabies shots. Both my dad and brother had to go through the series a few years back, so my heart goes out to her!


Permanent Link


Jul. 5, 2007 - special formula

Posted by Anonymous


I am so sorry to hear about baby Noah's problems and just want to share that I have a friend who has a 14 year old son who can only tolerate a special formula and that is all he lives on. His family finally got medicaid to pay for his formula which costs $10,000/year. She said it made a big difference when the formula company agreed to use nonfluoridated water in the formula.


Permanent Link


Jul. 6, 2007 - squirrel bite

Posted by Anonymous


An acquaintance of mine's daughter was bit by a squirrel a year or two ago. The authorities around here (Wisconsin / Minnesota) said that squirrels cannot carry rabies. I thought you might want to investigate this further.

Lori


Permanent Link


Jul. 6, 2007 - Untitled Comment

Posted by Anonymous


I am not sure if your child has been tested for this...but mine had similar symptoms and this ended up being what was wrong. I know it is a shot in the dark, but I thought I would add it in... eosinophilic gastroenteritis. Also, Celiac disease.

My prayers will be with your family.


Permanent Link


Jul. 6, 2007 - Untitled Comment

Posted by quietcajun


I have been going through many (but minor) struggles lately and your sweet attitude in adversity convicts my heart of my self-pitying attitude these past few days.

You will be in my prayers...


Permanent Link


Jul. 6, 2007 - Untitled Comment

Posted by Anonymous


Kyrie Eleison! By word of mouth, I have "met" your family. I am so terribly sorry for your struggles with your precious little boy. I am also a mom of 7 children. We are Orthodox Christians, we have many business irons in the fire it seems, and we homeschool. I also have a little girl with myriad health issues, because she has a rare genetic deletion on one X chromosome. It's called Rett syndrome. I know the developmental misses and lack of skills, the frustration of even struggling to find a diagnosis and the travel long distance to get it. Be courageous in this trial. May God bless you and others through you.

You and your family are in my prayers.


Permanent Link


Jul. 6, 2007 - You are an Amazing family...

Posted by Anonymous


This is my first time on your blog and your story has touched my heart. The strength and love in your family really comes out in your blog. God Bless and I will keep you in my prayers. Jessica from Florida


Permanent Link


Jul. 6, 2007 - God bless you

Posted by nwoleslagle@bellsouth.net


I find myself relating to your story quite a bit. A friend of mine donated to your benefit in my name and therefore gave me all the free downloads! I have 6 children at home - 2 teenage stepchildren - 4 of my own, twins that are 5 and were micropreemies so that they have lots of medical needs, a 3 year old and a 6 month old. I homeschool the little ones except Lillian who does much better with special ed. at public school. I will keep you in your prayers as you explore the mitrocondrial issue. I live in the Atlanta area and would be glad to offer you a place to stay if you need it. Just email me back and we can get to know each other. Keep the faith!!!


Permanent Link


Jul. 7, 2007 - join me in helping this family!

Posted by Anonymous


hello,
I am cathie, just another homeschooling mom like a lot of you! I enjoy reading about the lives of this family! They need our prayers and support. Hopefully you have recieved an email from friends and business associates of the Estes. they have put together a benefit for them. I guess the Estes are too modest to post it themselves, so I will. I have contributed to this family and I hope you will too. Our prayers are seriously coveted by them, but God will also use all of us who are willing vessels to bless them financially. here is the link I copied it from my email.

-In fact, dozens of the Estes family's friends & associates have
contributed a truly HUGE package of wonderful homeschool and family
resources as a "thank you gift" to folks who can help us in this
worthy effort.
Here's the site that explains all about this online benefit and how
it works:
http://www.chirotoons.com/benefit
You truly won't believe all the resources that have been donated
for this. It is really an amazing outpouring of love and support.
Please take a look... YOU can be a real blessing to a family in
need...and in return, YOUR FAMILY will receive can also receive a
blessing from the wonderful selection of resources that you'll find
there.
This benefit will only last for eight days, so take a look now...
and then please tell a homeschooling friend or two about it!

OK I have done my part passing it on to you. please continue to pass it on to those who you believe can benefit from a blessing. Remember, we give and it shall be given unto us! Give to them as you would want to be given to if it was you holding a baby Noah!(and all the other trials they've been through!)
thanks to all who reach out and help.
Cathie in Florida, mom to 3 wonderful boys, happily married to Bret 18years


Permanent Link


Jul. 8, 2007 - What a story of endurance!

Posted by amygabs in MI


Thanks for sharing your family trials. I am encouraged by your keep on keeping on attitude.

January my carpenter hubby fell and hit head on car bumper and sidewalk. He has closed head injury with left side affected with weakened muscles in arm and leg.

We have two children that are ADHD and one student in High School. Two youngest are homeschooled.

I took a night job and have health concerns. We have no extra funds, but still plan to school at home next year with dad helping and me planning.

We have to activate our Homeschool Legal Defense fund account and hope that all goes well with our up and coming year.

I'm burnt out most of the time and wonder what way is up. But still believe that homeschooling is the better way for my two youngest

Endurance in my situation is only thru the Grace of God.

Hope you 'story' unfolds into more hope than harriedness!

Amy in MI


Permanent Link


Jul. 9, 2007 - My heart goes out to you...

Posted by rvnurse2b


Sorry to hear about your situation. We had a daughter who spent her first 5 months in the hospital and also had a g-tube. I know what it is like to have your little one far away, and taking siblings to the hospital... Our little one gave our family tremendous joy also! May God grant you all peace and strengthen all of you.


Permanent Link


Jul. 9, 2007 - michelledarby@gmail.com

Posted by Anonymous


I feel for baby Noah, but my heart calls to Sarah's. While I know she's nowhere near neglected... it must be hard to deal with these trials while baby Noah's condition warrants so much attention.

I have a four and a half year old daughter. I can't imagine going through what your family is and still having such a warm and encouraging attitude!

Please let Sarah know that my Elizabeth would love to be her pen pal and that we're thinking of her!

I am not a religious person by any means, but I'm going to pray for your family ANYWAY! It can't hurt, right? I will be donating promptly.

With My Love,

Michelle


Permanent Link


Jul. 9, 2007 - Noah & MannaRelief program

Posted by Anonymous


I have had you and Noah's story on my mind for a while after reading your blog. He is such a precious boy and I have a child the same age. Today when I was reading some emails from other friends, I came across the passage below. I don't know if you would qualify for MannaRelief, but it couldn't hurt to check it out.

Good luck & God Bless,
Vicki
(below is quote from a different mom with a 5yr old Cystic Fibrosis child)
"A month after his diagnosis my husband and I
enrolled him in the MannaRelief program. This is a
nonprofit organization. You qualify based on the
medical need. He is supplied with many high quality
vitamins that target his specific needs due to his
condition. For instance, he takes a colon cleanser
because of the digestive problem......a vitamin that
addresses his hormone insufficiency...and many more.
After only a few weeks of taking these vitamins I saw
a big difference in him. I check on him at night and
now his pillow is not soaked so I know he is losing
less salt. They really help him and he feels good."


Permanent Link


Jul. 9, 2007 - feeding pump bags, formula

Posted by Dorie


If you need zevex bags, i have two boxes of them left. Kimber is still on a g tube, but never tolerated the pump. She could only take one ounce and hour. With the bolus she can get four ounces every 3 hours. She has never been able to take more than 28 ounces in one day which sounds a lot like little Noah. If I give her too much it just flows in the tube and right out her mouth. I also have Neocate formula unopened if you have any use for that. I have a ups account and would be happy to ship these items to you no charge. Also, there is a website I found once where you can get surplus medical supplies online. They are items people don't need like used pumps and new enteral bags, etc. I don't recall the web address, but maybe you could google surplus medical and find it. love, dorie


Permanent Link


Jul. 9, 2007 - Squirrels and Rabies

Posted by Anonymous


I stumbled onto your site and wanted to let you know that I will be praying for your family in your time of need.

I read a comment from another visitor who told you that squirrels cannot carry rabies, and I wanted to let you know that is incorrect (so you wouldn't think your daughter went through this for nothing). Any mammal can carry rabies. Although squirrels are not a primary threat of transfer of rabies, they can and will bite people, therefore the danger is there (as your daughter experienced). Not common, but possible.


Permanent Link


Jul. 10, 2007 - Trials

Posted by Anonymous


Dear Estes family,
I just learned of what you all have been going through and my heart goes out to you. So many things brought back memories for me, but I know that nothing can compare to what you are going through. We have a special needs child that we adopted 5 years ago. She has spina bifida, but was also addicted to cocaine when she was born and some of her internal organs were on the outside of her body. She has been through many surgeries and we have all spent a lot of time at Vanderbilt. She had a g-tube/mickey button for about a year and she was fed by tube with Pregestimil formula. That sounds like what you are doing and I know that stuff was about $35 per can which lasted about 3 days. We also had to depend on the pump due to her not being able to tolerate bolus feeds. We fed the bed, our laps, and the floor at church multiple times. :-) We also fed the mall floor once. She had a bad gagging problem and we would have to vent her through the g-tube in her stomach as she threw up. That sure made life in public interesting. She also had/has several medicines that she must take daily, a colostomy bag, a catheter, a shunt, etc.
I can't imagine how hard what you are going through is like. Not knowing for sure what it is or if it will get better is more than we have gone through. Our daughter is now 5 and uses a wheelchair most of the time, but can walk about 1 hour a day with special bracing called RGO's. It is amazing since she can't feel or move her bottom or legs at all. Her leg bones are even dislocated from her hip joints and she is the most flexible person we know. :-)
During this last 5 years with her, we also have homeschooled, built our house after moving 3 times in 2 years, dealt with my mom who has been missing for three years, our 9 year old getting bit by a brown recluse, my husband having back surgery, losing our foster child of 2 years back to her family that had asked us to adopt her, losing a biological baby that we waited years for and after having a reversal for due to food poisoning, where I nearly died along with our special needs daughter, after which I developed several food sensitivities (gluten, dairy, sugar) and Irritable Bowel Syndrome (2 years ago nowof which I have most always been in pain), and I was recently diagnosed with ITP which is a blood/platelet/immune system disorder. This doesn't even include vehicle problems, financial issues, and regular life struggles.
I don't say this to compare our struggles because no one can understand what you are going through or how hard your circumstances are. Nothing is ever the same. But, I do say this to remind you (as I know you already know) that our Awesome Father in heaven gives us strength and what we need and can get us through it all. Whether this is just because we live in a physical and fallen world, or because the enemy wants to destroy all that is good, or that the Father has allowed it for some other reason, we know that He will never leave us or forsake us and that He has already done more for us that we deserve by giving us salvation, love, mercy and grace, comfort, family, doctors, medicines, friends, His Word, and so much more. He will and is using this, so know that it is not in vain. Keep your faith and may the Father bless you with healing, strength, finances, rest, family time with all your little arrows/lambs, and His sweet Shalom.


Permanent Link


Jul. 10, 2007 - Untitled Comment

Posted by Mother of Special needs child


I'm definately praying for and your family. Hold on to Romans 8:28. It will be very personal to you and your family. And remember joy comes in the morning. Your family is beautiful!


Permanent Link


Jul. 10, 2007 - Untitled Comment

Posted by Anonymous


Please contact me if the Holy Spirit urges you to do so. drsonja@earthlink.net


Permanent Link


Jul. 10, 2007 - Thanks for keeping this blog

Posted by ThreeLittleLadies


I will keep baby Noah and the whole family in my prayers.

Carol


Permanent Link


Jul. 11, 2007 - rabies

Posted by Anonymous


ii am praying for you and your little ones
mt 11 yr. old son just went through the rabies shots
i understand what you are going through
nate did not have bad reaction, thank God !!
but it is very painful---so much so our sweet pediatrician screamed at me and cried as she gave him his shots


Permanent Link


Jul. 11, 2007 - I am praying for you

Posted by Joy


I am praying for you and your family. May Jehovah be glorified in all of these trials. It is encouraging for me to see you count your blessings in the middle of these trials. Thank you for sharing.


Permanent Link


Jul. 11, 2007 - We will be praying for you

Posted by Mark,Joy and family


Dear Noah and family,

Thank you so much for sharing your story with us. We will be praying for you and others everyday. Thank you for being a testimony of faith and trust in our loving God. For All things are possible with God. We love you.


Permanent Link


Jul. 12, 2007 - Noah

Posted by Anonymous


I just ran across your first blog about Noah. I haven't read them all, yet, but just wanted to send this off. We have a 6-yr. old daughter who is also on a g-tube. She has too many medical problems to list here. But to put it in a few words she can't walk, talk, sit, roll, swallow.... She's had a few surgeries, including open heart surgery at 7 months, & more to come. She is the youngest of 4, and , like your Noah, always has a smile & has an effect on people that I can't explain. Toddlers to seniors seem to be drawn to her, and when they walk away, they are changed. I can't explain it, except that God is using her to touch people.

We have been through similar ordeals as you with constant doctoring, ER visits, sleepless nights, etc. Our prayers are with you all. When we first learned that our daughter had medical problems, I was reminded of something Rich Mullins said to his sister when she gave birth to a handicapped child. "God only entrusts special children to special parents." May you find strength is those words as I have.


Permanent Link


Jul. 13, 2007 - Little Noah and your family is in our prayers!

Posted by mchaffer


I have 6 children and my youngest was born last August 14th, so close in age to your little Noah! We will keep your family in our prayers, believing for miracles for Noah! Noah "shall live and not die and declare the works of the Lord."

Blessings,
Michelle and Family


Permanent Link


Jul. 13, 2007 - Untitled Comment

Posted by 3boyz


I just saw the donation request in the TOS newsletter. We love HnH and order from you each year! I need to place a new order soon.

I never realized you had a blog or were facing so many difficulties. I will add you and your family to my prayers. Please keep us updated on how all of you are.


Permanent Link


Jul. 13, 2007 - praying

Posted by InfertilityMom


I just learned of your family and story and will be checking for updates regularly to be praying along side you!


Permanent Link


Jul. 13, 2007 - Noah

Posted by Anonymous


There is an Herbalist, Marijah Mc Cain @ herbalhealer.com that maybe able to guide you holistically to a solution.
A fellow homeschooler w/ Grassroots in Illinois,
R.


Permanent Link


Jul. 13, 2007 - Untitled Comment

Posted by TS92901


Wow! Your family is definitely in our prayers. We also have a Noah and we had some growing problems with him- he was 2 ounces under his birth weight at three months old. Fortunately it took them (the doctors) only three weeks (once hospitalized) to figure out his problem. He has very severe food protein allergies and something called pseudoaldostronism- an adrenal problem. He is now on Neocate formula and is taking a form of steroid to help with the adrenal problem. He is now nine months old, 17 lbs 2 ounces, 28 1/2 inches long and into everything! I praise the Lord daily for his continuing growth and good health! It is very hard to see your child suffering and I can easily put myself in your shoes. I pray the Lord will give the doctors wisdom in Noah's (your Noah...) care. I also believe that the Lord heals and he can work an amazing miracle in your little Noah's life! You are very blessed to have such an amazingly beautiful child!
~Sarah
(www.homeschoolblogger.com/3beautifulboys)


Permanent Link


Jul. 13, 2007 - Untitled Comment

Posted by Teri


I just read you blog, I found you from In a Shoe- although your name seems familiar to me. I have 3 children, my middle on- David has a mitrochondrial disorder. He was older when he had his muscle biopsie, and loves to show off his "prayer scar," that is what he calls it because of all the people praying over him.

I will be praying for you and your family. I want you to know that you aren't alone.


Permanent Link


Jul. 14, 2007 - I am praying for you

Posted by Nanci


Hello,
I just found your blog today. Thank you for the update post! I am praying for your families health and car. How close do you like to Texas?

Nanci
kleinmissions.com


Permanent Link


Jul. 14, 2007 - Hello

Posted by Anonymous


I just found your blog, I am on MOMYS. Are you from SC? I am originally from Conway near Myrtle Beach. I have been to MUSC many times with a dear friend and her son who had cancer. He is in remission now. The hospital was always really good! Blessings to you, Angie


Permanent Link


Aug. 7, 2007 - Untitled Comment

Posted by IslemG


I've been hearing about your family from several places, but a link at the HomeSchool Radio website finally lead me to your full story here. I have read several of your posts before I read your 'summary' post last night, and I just stand amazed at the incredible faith you have expressed all the while! It is so true that when we face trials is for the purpose that the name of our Alimighty God would glorified. God will honor those who honor Him! Keep standing strong on the Rock of Ages, the One who is control of everything. Stand firm on His promises, he never fails. Your family will be in my prayers.

Blessings!


Permanent Link


Aug. 10, 2007 - Hello

Posted by Anonymous


I've dropped by your blog every once in awhile and I have wondered a few things. I'm glad you posted this looonnnggg post and cleared up some questions I have had. I don't know how you have time to post at all! You are a blessing to all of us and my prayers are with Noah and your family! He is a gorgeous child and you can see his flirtiness in the photos :)
I hope you can get some answers for his diagnosis soon and I hope its positive. All things work for good through Christ....I can't remember the verse exactly but what that's what I thought of when reading this post...
Jen from http://specialneedsinhomeeducation.blogspot.com/


Permanent Link


Aug. 25, 2007 - Untitled Comment

Posted by Anonymous


OH Kate and Jeff, My heart goes out to you and little Noah. I have a son about that age so every time I look at him, I thank God for his health and then pray for Noah and his health. You are an inspiration. I pray for you often and look forward to the updates on how Noah is doing. Thank you for keeping us informed. We live in Oklahoma and heard about little Noah, so subscribe to your updates. So know that people from all over the country and even the world are praying for you and Noah. May God bless you and heal this child.


Permanent Link


Aug. 26, 2007 - Prayer

Posted by Patty


We will conitnue to pray not only for Noah but for all of you as you endure this trying time. You are certainly holding up much better than I would be.

God bless you all,
Patty and family


Permanent Link


Sep. 28, 2007 - Celiac Disease

Posted by Virginia


Has Noah been checked for Celiac Disease (a disease where your immune system doesn't tolerate gluten)? Just read an article in Sept. 17 Newsweek and the symptoms they mentioned made me think of Noah. They listed celiaccenter.org to see a checklist of symptoms.
Your family is in our prayers.


Permanent Link


Oct. 8, 2007 - Untitled Comment

Posted by Anonymous


What an amazing story. I found your site because I am just starting to homeschool my 7 yo daughter Hannah. She has been sick for 3 years, and no one knows what it is yet. Hospital visits and appointments at Children's in Birmingham Alabama are frequent for us. It can be difficult, but like you we praise the Lord for the many blessings he sends. Hannah passes out Ty benie babies to anyone she sees when she is in the hospital, or in clinics at Children's. We enjoy telling others of God's amazing and wonderful Love. Hannah loves to tell anyone that will listen that "Jesus Love's them!" She is an encouragement to others. We will be praying for all of you! Noah especially. Always remember ....
"If God Brings You To It, He WILL Bring You Through It!" Much Love and Prayer's, Lori and Hannah and Sarah Jordan -- Montgomery Alabama


Permanent Link


Dec. 2, 2007 - Untitled Comment

Posted by Tonya


We too have a child who has been very sick. Our Jacob (youngest of three) was diagnosed w Down Syndrome at birth and then Leukemia when he was 19 mo old. He is a wonderful boy, he keeps us smiling, that is for sure. He is now in remission and doing very well. The whole experience has given me a heart for other moms who are in a similar place to where I was not too long ago. I feel blessed to have my son and I thank the Lord for his health. I will keep u in my prayers.

Tonya


Permanent Link


Dec. 17, 2007 - thank you

Posted by threejane


For the synopsis of your blog! I have you set up on my home page so I can read your updates. Thank you again for an interesting peek into your life!


Permanent Link


Dec. 21, 2007 - wow

Posted by Hediedforme


I don't know what to say--I promise to be in prayer for you all. It would be great if I could just say things to bless and encourage you, but I have to be honest that I'm just heartbroken for all your family is enduring and for the trials your sweet boy is enduring. We DO serve a BIG God who is mighty and powerful, and I'm just certain along with you that He holds us in the palm of His hand and He has a plan for Noah. God bless you folk.


Permanent Link


Dec. 26, 2007 - Untitled Comment

Posted by Michelle32


Thanks for the background entry.
We've been keeping up with your family
and praying for a long while now!
We only wish we lived nearby to stop
in and encourage you in person.
God bless you and Merry Christmas.
We're praying for Noah to pull through this
newest round of mystery illnesses and come home.
Praying for God's perfect will for each one you!
Michelle


Permanent Link


Dec. 29, 2007 - Untitled Comment

Posted by Anonymous


Thank you for posting this! I have prayed for you and your family and especially little Noah and never really knew your whole story. This has definately put a perspective on your amazing journey and your strength, courage, love and heart for God and your family! What wonderful gifts you have, your beautiful children and yes husband too! I will continue to keep you all in our prayers. Thank you too for the encouragement, I am a new homeschooling mom and don't know where to start with my almost 4 year old and 14 month old boys! But I know that we do serve an amazing God and through Him we can do all things!

God Bless you and your family
Trish


Permanent Link


Jan. 29, 2008 - Kindred Spirits

Posted by gkbcameron


I was recommened your Hands And Hearts website for history supplies and decided to check out your blog. WOW - what an amazing story and faith your family has. I feel very linked to your situation. If you have time, check out my blog for more info but I will summarize why reading your introduction post touched my heart so deply. Our third daughter, Phoebe Grace was born just days after your Noah. After a splendidly smooth and quick delivery we went home thinking we had another healthy arrow for the quiver. At 3-4 weeks (possibly birth but we were unsure) she started having seizures. Now at 17 months old, she is at about a 6-8 month developmental age in all areas, has cortical vision and hearing impairments, and hypotonia. Lots of doctors, therapists, and research involved in her mysterious case because no one can pinpoint a diagnosis. Mitochondrial and metabolic genetic disorders were discussed, but it has dead-ended with some normal test results. Many things point to a brain injury however her CT and MRI scans have been normal too. I will definitely be adding you to my friends list if you don't mind and will be checking up on Noah often. I will read more about his recent health issues soon. I am not networked at all with other families who are going through similar situations and am encouraged greatly in discovering your family and realizing you seem like-minded in many ways.


Permanent Link


Jan. 29, 2008 - Congratulations!!

Posted by Anonymous


Welcome to the new baby sister!!
:) Melody and family
www.caringbridge.org/visit/natalieholmes


Permanent Link


Jan. 29, 2008 - blessings:)

Posted by Anonymous


I stumbled upon your blog today and was so very blessed! What an amazing family you have! And a very beautiful one too:)

Blessings,
Amanda Smotherman


Permanent Link


Feb. 25, 2008 - i'll be praying

Posted by Anonymous


i'll be praying for you ! as my dad says God will give you grace when you need it most. psalms 29:11 "...the LORD will give strength to his people."


Permanent Link


Apr. 15, 2008 - Looking for a potholder loom lead me to Noah!!!

Posted by Cindy from Faribault, MN


An hour ago I googled "potholder looms" (All the kits are advertised for kids; hmmm, I'm 54!), and I've ended up getting to know Noah and your wonderful family.

Thanks for the great "summary" of Noah's story and your family. It helped as I started to read the posts from the beginning. I had so many thoughts and feelings as I read the struggles and joys you've all experienced as the days and months have gone by.

Kate, your description of what happened when you couldn't give little Noah any solid food brought tears to my eyes. Not being a mom myself, I can't truly understand how painful that must've been for you to have him "reject" you, but it must have been excruciatingly awful.

I copied and printed one of Noah's picture and will put it on my prayer wall. I also copied the picture of your whole family. It's more personal for me to pray for folks I don't know if I have their picture.

I'm obviously not done reading all the posts but have to comment on the one written Feb. 25th as I laughed outloud for quite some time. My cat looked at me like I was going nuts! It started with the Chinese food, Castro and Cuba, evil man who was dying, kids not listening, Grandma Eva dying?, no, the guy who shot Abraham Lincoln? Then, "Very much animals died to give us our lunch today." as she chowed down. (Wonderful awareness on her part!) David the Super Duper super-hero whose secret identity was lost when one of his two shirts was taken off and then when the cape, wristbands, ID card and mask were removed from his pants before Sunday school. I've started to laugh all over again!!!!! : )

Please know that Noah and your family will be in my daily prayers. I have many friends who home-school and will share your story with them and ask for their prayers as well.

Your faithfulness, perseverance and joy amidst the pain and struggle is truly an inspiration. You do walk with the Lord!

Make God continue to keep you all in the palm of His hand.

Sincerely, Cindy


Permanent Link


Apr. 15, 2008 - Praying for your family

Posted by Ruth Patton


Hi, I was homeschooling last year and knew a bit about what was happening with your family. I have since put my kids into school and have just found you again (my email newsletter came!). I will be praying for your family. I can understand a bit about what you are going through, our 5th child was born with many problems, just 5 months ago, she now has a feeding tube and a whole bunch of what we call "Faiths People!". I just wanted to leave you with a verse that we confess daily over her, and all the family, Jeremiah 29:11 For I know the thoughts I have towards you, says the Lord, thoughts of peace and not of evil, to give you an expected end. This is what we stand on for Faith and her life...and I will pray this for Noah as well!


Permanent Link


Aug. 12, 2008 - Untitled Comment

Posted by Mommyto3inAZ


Kate and Jeff
I came upon your blog quite by accident, however, I am so happy I did. I actually ordered somethings a while back that was part of a fundraiser to help Noah (I think it was through Homeschool Radio Shows). I was touched by the story but now that I've read your blog I am smitten with Noah-such a sweet little boy!
May God Bless you all---if I lived closer I would've donated blood for him--Happy Birthday to that little man!


Permanent Link


Sep. 30, 2008 - Praying for You & Yours

Posted by Michelle122161


Thank you for posting about Noah and everything else going on with your dear family.
I like the slides.
My heart goes out to you.
(((HUGS)))


Permanent Link


Oct. 26, 2008 - Saying hello!

Posted by Anonymous


I just wanted to say hello. I'm not sure how I found your blog but I know I was meant to find you. I have a son (10) with a neurodegenerative disease. It is not mito but has similarities. We are a Christian family who strive to keep life normal for our family (3 other children) as we possibly can! You can read about Andrew here:

www.andrewsbravejourney.blogspot.com

Alison


Permanent Link


Dec. 12, 2008 - Untitled Comment

Posted by Clara


I just stumbled onto your blog and read about your son, Noah. I was interested to see that he is on TPN. My mother was on TPN for full nutritional support for over 17 years - she was sick for 24 years with a different condition from what your son has - the Lord took her home in June 2006 (she was 51 years old). She had a Hickman's catheter - the tube led into her chest and straight into her heart so she could hook herself up to TPN every night and could also have a morphine (an opiate pain killer) pump 24/7 because she suffered continuous pain for most of the last 17 years of her life. I helped care for her throughout my childhood and young adult years... Her disease was completely different, but I can relate to having someone sick in the house 24/7 always... She could eat very little (sometimes nothing because eating caused her excruciating pain in her abdomen most of the time) and gained no nutritional benefit from it. The Lord bless you as you care for your son. He is faithful and will always comfort and strengthen you through your journey with Noah.
http://danielandclara.blogspot.com/
email: hopingtoflyfree@yahoo.com.au


Permanent Link


Jan. 3, 2009 - prayer

Posted by momofsix


My five year old's favorite name is Noah because of Noah and the ark. I will pray with my son for Noah. I wanted to tell you this so that you know your story has touched our hearts in more than one way. My son, Sam, miraculously recovered from being so very ill at a month old. I released him to the Lord, telling God to take him home and not let him live in pain, or heal him (that is how bad it was-eleven months of hospitalizations). He recovered fully healed by God. He had to have two years of developmental therapy and speech therapy. He has fully recovered. We, too, can really relate in how difficult of a journey a child's illness is. We will pray for your son to also have a complete healing.


Permanent Link


Feb. 1, 2009 - Just Read this Page...

Posted by Anonymous


Hello,

Please know that you are in the prayers and thoughts of an Alaskan homeschooling family for your son beautiful Noah. We so hope and pray for Noah and you all.


Permanent Link


Apr. 7, 2009 - Protein/Enzymes

Posted by Anonymous


Hi -
I know you probably covered everything with Noah, but I figured I'd toss this in there just in case....I have a son with gut issues who led me to research online...I found a lot of information on digestive enzymes and also about some people's inabilities to break down proteins. One person online that has a lot of info is Dr. Amy Yasko. but there are a lot of other resources that come up on Googling.

I apologize for the unwarranted post, but I wasn't sure if you had covered this area and figured it was better to post just in case.

Good luck, you have a truly beautiful family.


Permanent Link