Houston, we have a foundation!

I just got off the phone with Jeff a little while ago - he and the older three boys had driven to Columbia today so that they could hand-deliver the articles of incorporation for Noah's foundation to the Secretary of State's office.  Doing so allows immediate approval instead of waiting weeks to get approval by mail.  There were no problems and we are now officially incorporated!!

The name of the foundation is Noah's Hands of Hope, Inc.  We have a seven-member board of directors and will be applying for 501c3 status within a few weeks.

We will be working primarily with children with mitochondrial diseases and their families, but will also work with medically complicated children who have no diagnosis, a presumed mito diagnosis, or who have a rare, under-publicized and under-funded diagnosis.

This foundation will have five main areas of activity, like the five fingers on a hand.  I think you'll see which ones Noah helped name!  :-)

1. The Dragon Club:  This is support for the sick children.  One of the first programs we'll be instituting is the Dragon Bead program.  Participating children will receive a glass bead for every medical procedure, doctor's visit, hospital stay, etc. as well as a special themed monthly bead and beads for special occasions or special challenges.  These children truly do fight dragons every day, and these beads will acknowledge their fights and allow a visual way for their stories to be told.  Other programs will include things like doctor's office busy bags to help pass time during long clinic visits, balloons delivered to their rooms during hospital stays, and hospital-friendly, developmentally appropriate books, crafts, games, and toys for use during hospital stays.

2. The Octopus Club:  This is support for one of the most overlooked groups - the siblings of the sick children.  These children are also fighting hard, and make many sacrifices.  Participating children will be enjoy things like a sibling bead program (Octopus Beads, similar to the Dragon Beads, but tailored to siblings), doctor's office busy bags for siblings who go along to doctor's visits, All Star Sibling packages of gift certificates for fun outings and special treats, birthday packages, etc.

3. Memory Making: It is our goal to provide each family with memory-making kits, handprint kits, voice-recordable ornaments or frames, gift certificates for photo books, etc.  80% of children diagnosed with a mitochondrial disease before age 5 will not survive to adulthood, and we want to support and enable memory-making activities for their families.

4. Family Support: Having a medically fragile or terminally ill child places an enormous strain on the family as a whole, and on the marriage in particular - in fact, divorce rates among couples with a special needs child are quoted as 80%-90%!  We want to support the family unit and the husband and wife unit with things like gift certificates for meals during difficult times; gift cards toward gas, groceries, and other expenses; supportive books, DVD's and music; access to family activities like museum or zoo memberships; gift certificates for date nights for the husband and wife, etc.

5. Knight and Day Prayer Partners: This will be a network of volunteers matched with participating families. Partners will read the blogs of their assigned families, pray, leave blog comments, send cards or other support as they feel led, and serve as a front-lines triage to let us know when their assigned families are facing particular struggles or celebrating special milestones.

Our goal is to serve in ways that are more deep than wide so that we can make meaningful connections with our participating families.  There are VERY few charities or foundations reaching out to the families of children like this.  Those that do exist are generally very wide reaching with a focus on awareness and research, or are focused on a specific hospital system.  While these are important and valid needs, we feel called to do something different.

We are working as hard as possible to get these programs going as quickly as possible.  Noah wants to be involved in this, and we want very much to make things happen quickly for him. To do so, we need your help.

How can you help?
1. PRAY.  Pray for wisdom, for efficiency, for provision, and that things will fall into place as quickly as possible.
2. Donate financially.  We have an EIN and will be setting up a bank account in the morning.  We are not set up to take Paypal donations today, but should be set up for that within a couple of days.  In the meantime, you are welcome to mail a check or money order made out to Noah's Hands of Hope, Inc. to 101 Sherwood Lane, Greenwood, SC 29649.  We are hoping to raise some initial funds quickly to cover the cost of filing a 501c3 and so that we can rapidly impliment some programs after our first board of directors meeting (February 4th).  If you are mailing a check and could take a moment to let us know it is on its way, we'd appreciate it!  You can also mail or email Amazon.com cards which will go toward items for the busy bags and packages for hospitalized children.
3. Help us raise funds.  We have a very professional team with an amazing portfolio who is building our website free of charge, but in the meantime we will be putting up a small, introductory website.  As soon as that is in place (within the next few days), we will announce the URL here.  We'll have a Chipin widget on the site that you can cut and paste onto your own blog or website.  We're asking people to donate "A Dollar for Hope."  If you feel led, you can blog/facebook/email about Noah's Hands of Hope and ask those who you know to simply donate one dollar toward this cause.  (They are welcome to do more, of course, but a lot of single dollars can really add up!)
4. Help us raise public awareness of Noah's Hands of Hope.  Of course, if you participate in the A Dollar for Hope campaign, this will provide some great awareness.  In addition, if you have any contacts AT ALL that might be willing to contribute or to help spread awareness, we would appreciate your reaching out to them.  Media, musicians, authors, well-known bloggers - we would deeply appreciate help from anyone who can help us spread the word and raise funds.

In time, we'll take applications for Knight and Day Prayer Partners and will also share other ways you can help, but these areas are the ones of the greatest need right now.

I realize that this post is very different from my usual ones, and I hope that my bluntness in asking for help is not an offense.  If Noah were more stable, or if he had already gone home to be with the Lord, I am sure we would be taking this far more slowly . . . but the painful truth is that we simply don't know how much longer he has, and we are DEEPLY committed to making this happen while he can help.  The other night he was having a very rough night with a lot of pain.  Instead of complaining, he told me that he wanted me to buy 400 Playmobil Egyptian pyramid toys (one of his favorite toys) and lots of pretty paper so he could wrap up the pyramids and send them to all of the little boys and girls with mito.  This is his heart.  I can't make him better, no matter how much I try, but I'll move heaven and earth to be sure that he gets a chance to send some beads to children, to help package up some busy bags, and to wrap some presents for children in the hospital.  Can you help?

Blessings,
Kate

*** I want to reiterate that we do NOT have 501c3 status at this time, so donations made at this time are not tax deductible.  501c3 status is retroactive, so it is likely that tax receipts could be issued by year's end, but no such guarantee is being issued in the event of any difficulties obtaining 501c3 status.  It truly should not be an issue, but I don't want to be misleading in any way.  I also want to emphasize that even though we do not have that status right now, this foundation and its board are handling all funds and record-keeping as if 501c3 status had already been bestowed.  Our board is made up of men and women of the highest integrity and I can assure you that any donations will be handled with integrity, care, and prayer.***

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New baseline

THANK YOU so much to all of you for continuing to pray and for your patience between blog updates.  Thank you also for those who are cutting and pasting my little FB updates into the comments for me.

Noah is holding his own.  He's not actively sick in the sense that he has no fever, the infection (he grew out MRSA in his urine AGAIN) seems to be abating, etc.  On the other hand, it's hard to say that he's actively living.  His new baseline is a hard place - he's very listless, and while he tries so hard to live and engage and play, he is seldom able to do so.  He'll ask to play on the Wii, but can barely hobble the few steps to a comfy chair in the living room.  Walking at all is painful for him and heartbreaking for us to see, but he doesn't want to be carried if he can manage at all to get there himself.  Even so, it takes a person to push the IV pole, a person to carry the drain bags, and a person to strongly hold and support much of Noah's weight for those few steps.

Once he gets to the chair, he's too tired to even use the Wii controller.  Before this latest illness, he'd actively play by telling a sibling what to do, and the sibling would control the Wii - now he just curls up in the chair under a blanket and watches.  He'll ask for toys in his bed, then be too tired to play with them.  It's just heartbreaking.

He still has little flashes of his former enthusiasm, and has short times when he will play with his toys, but they've become the exception.  As he gets farther and farther from this fever and the active phase of his illness, we keep hoping that he'll turn a corner, but he hasn't yet.

His swelling and ascites are increasing despite tripling his dose of lasix.  His liver numbers are shooting higher - should be around 30-ish but are over 1,100.  He needs a tremendous amount of care around the clock right now and we are all doing everything we can to give him the best quality of life possible. 

He remains eager to do something for other children who have mito, and we are working VERY hard at getting his foundation up and running while he can still participate and see what is being accomplished in his name.  We have a board of directors, should be incorporated by tomorrow and will have a bank account by Tuesday.  I'm going to try to write a post in a day or two outlining just what we are hoping to do with this foundation.

I could write so much more, but need to run.  Please just keep those prayers coming.  We are so, so tired right now but would gladly continue his grueling care schedule for a hundred years if it kept him here with us.

Blessings,
Kate

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VERY sick

We are right back where we were three weeks ago today.  Noah's fever has continued to climb and isn't responding to fever meds (tylenol and ibuprofen alternating every 4 hours).  His fever was 104.9 the last two times we checked.

He now has some fluid in his right lung, which is where the fluid build up started last time.  The difference is that last time, we gave lasix which eventually worked to pull the fluid off.  He's been on lasix ever since then, and this time he's getting the fluid in spite of the lasix.  I just spoke to his infusion pharmacist and he said that the other good choices for diuretics are not available IV.  Unless they can find something IV that will work on this fluid, it could continue to fill his lungs.

He is making urine, but it is very dark - butterscotch colored.  He is retching a LOT.  He's insisting on sleeping sitting up - I've managed to put the head of his bed back just enough so that he isn't falling forward, but with every tiny adjustment back he opens his eyes and shakes his head "no."  It probably helps him breathe better to be upright so we're only barely reclining him.

Any touch or movement makes him start retching again, so I don't even feel like I can climb into bed and snuggle with him.  I slept on an inflatable mattress by his side all night - using the word "slept" very loosely of course.

If anyone would like to come by and pray or just sit, you are welcome.  There is no need to call and no need to knock.

Blessings,
Kate

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Sick again

We didn't get any real, actionable info from the echocardiogram and the labs - or at least we didn't think that we did.  The echo was basically normal and the cardiologist thinks that the weird stuff from Friday was caused by the clot that had been blocking Noah's central line.  The clot appears to have dissolved as it was no where to be found, which is great news.

I spoke with Dr. B for a while lat night trying to make sense of the various "off" labs and trying to figure out where we go from here.  One concern is that Noah is still having random, dangerously low blood sugars that appear out of nowhere on routine labs.  Right now it seems like about every 3rd or 4th set of labs shows very low blood sugar.  This pretty much shouldn't be possible as Noah has a perfectly stable delivery of sugar/carbs.  There are no highs and no lows - just the same rate dripped in 24/7.   Because of these blood sugars and some of the other labs, Dr. B had a talk with our wonderful GI Dr. M.  We also made plans to set an appointment with heme/onc on Monday because it looks like Noah needs some blood.

This morning Mary Faith woke up with a high fever and a bad cough.  While we were waiting for our family doctor's office to open so we could get her an appointment, the GI office called.  Dr. M had looked at everything and wanted Noah to come in to Greenville right away for an albumin infusion. My stepfather offered to take Mary Faith to the doctor for us and we got Noah and headed to Greenville.  ( Turns out Mary Faith has a very, very bad double ear infection and is absolutely miserable.)


When we got there, we both commented that he wasn't really looking good at all - pale, kind of vacant expression.  Within a few minutes he started shaking and having very strong tremors.  Initially he wouldn't even respond to us but eventually he did respond so I don't think they were seizures - but it was scary for a couple of minutes.  As we got everything set up for the 2 hour infusion the nurse checked his vitals and noted that his temp was elevated to 100.5, which is officially considered a fever.  She checked it every little while and it climbed to 101.4.  Jeff walked across the street to get some Tylenol suppositories which we gave Noah, and we called Noah's hospice nurse who called Dr. B.  The GI nurse agreed to draw Noah's labs when the infusion was complete so that we would have results faster versus waiting and drawing them when we got home. 

In the midst of this, the GI nurse called Dr. M the GI doctor (who had gone over to the hospital) to let him know what was going on, and he said that with that fever, Noah would need to be admitted.  One of the hardest, most heart-crushing things I've ever done was to explain to this sweet nurse who we love that we were not going to admit Noah.  I literally felt like I was going to be sick.  It was one thing when he got sick last time and we decided to stay at home, but it was another thing altogether to be there by the hospital, with a sick-and-getting-sicker-fast child, and decide to go home.  There was a part of me that wanted SO much to grab him and race to the hospital.  I wanted someone to fix him, but the hard truth is that there is no fixing him anymore.  Had I caved in, he would be under bright lights being prodded and stuck and miserable instead of where he is right now - cozily sleeping in his own bed surrounded by his favorite things and his family.

Don't get me wrong - there is nothing wrong with being in a hospital and there have been SO many times in Noah's life that a hospital has been exactly the right place to be.  There have been SO many times that he's needed, for his own good, to undergo painful and scary procedures . . . but this isn't that time.  Once again we were faced with the reality that if he is getting really sick, a cascade of interventions would start happening in the hospital and we would not be able to walk away and take him home.  We've promised not to do that to him no matter how much it breaks our hearts.

So, we are home.  Noah seems comfortable.  His fever is continuing to climb even with the Tylenol and I'll give him some IV ibuprofen in a little while, but his fever isn't sky high right now - it's just under 102.  He slept most of the way home and woke up lucid enough to do a couple of things with me for a short while.  A precious friend sent us recordable ceramic hearts for all of the children and he recorded messages to all of his siblings.  He also made a Bear Factory alligator that he'd been given (like a do-it-at-home Build A Bear).  It was about 30 minutes of alert time then he was ready to go to sleep.

We're still waiting for the labs.  I don't expect them to be really bad right now simply because we drew them so quickly after Noah started running a fever, but it will be interesting to see what they look like tomorrow.

This all feels kind of like a waking nightmare.  Just last night Jeff and I were saying that we felt like maybe we could start to breathe again - yes, Noah is very, very sick and his new baseline is pretty bad, but he was no longer battling this virus and infection, his organs all looked good, heart function was good, and we were ready to start finding our way back to some semblance of normal life instead of crisis mode.  Guess we spoke too soon.  I keep telling myself that maybe this is no big deal and that he'll wake up feeling fine.  He isn't crashing nearly as quickly as we've seen him crash before, and that's a good thing.  On the other hand, we've all been very concerned about whether he could pull out of the next illness and I certainly didn't expect him to get sick again so fast.  While he's no longer dealing with the virus and infection he had three weeks ago, (three weeks ago today, in fact), he has by NO means recovered and is not in a good place right now to be dealing with another insult.

I am SO thankful for the Lord's timing on this.  The albumin he received today should start pulling off some of this awful edema and that is especially important now that he is sick again.  The edema was so very dangerous and life-threatening last time - and that is with him starting with NO serious edema.  He simply can't afford to add more to what he already has, so this timing was just beautiful.

I will update here as I can and as I have news.  If someone can paste in FB posts into the comments, that would be great.  I can update FB from my phone but can't update here, so if I'm in the car or sitting by Noah, FB is the only thing that gets updated.  Also, if things are changing rapidly I can do a quick, two sentence post on FB in a fraction of the time it takes me to go through the steps to post a blog and send out the notification email.  I appreciate all of you blog readers SO much and am truly not trying to keep anyone out of the loop!!

Specific prayer requests:
Comfort for Noah
Wisdom for Dr. B and all involved
Peace for Jeff and I and the children
For the albumin to do its job and pull off some fluid
Comfort and healing for Mary Faith

Blessings,
Kate

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Ups and Downs

It's been a bit of a rollercoaster this last week.  Noah is having increasing swelling and edema especially around his torso.  The swellling is so much that we had to go out and buy him some t-shirts a couple sizes bigger than his regular size - his tummy is so large that his regular pajama tops kept flipping up and leaving his tummy uncovered.  His weight is up 13 pounds since right before he got sick.

He's having increasing pain, especially in these very swollen areas.  Thursday we'd planned to draw quite a few labs to try to get a fix on just where Noah is right now.  This is important because the hospice nurse believes that at least some of this belly swelling is caused by ascites, or pockets of free fluid in the abdomen.  This could be primary or secondary and we needed the labs to tell us which.  If it is secondary (caused by a different main problem), we could be looking at his kidneys and/or liver starting to shut down.  Better news would be that it is primary (it's own problem), but even that isn't great news.  Either way, this fluid is close to the point where it could start to interfere with Noah's lungs and heart by pushing and crowding them.  (Imagine trying to breathe if you were in bed and someone put a 13 lb bowling ball on your stomach!)

At any rate, when the nurse tried to draw labs on Thursday, neither line would return blood.  We could infuse, or push fluids and meds into the lines, but could not draw blood out for labs.  The result was a long and fairly stressful day spent trying to find someone who would treat the lines with TPA or Activase (clot busters).  The Greenville surgical office refused to even look at Noah - their take on it was that since we had the line placed in North Carolina, then we could have the line cared for in North Carolina.  Ridiculous is really far too small a word . . .

Dr. B contacted the pediatric hemetology/oncology clinic (same hospital system, different department) and they agreed to do it, so Friday we headed out to Greenville where a heme/onc nurse was able to clear the clot quickly and easily.  Noah's cardiologist was concerned about all of the swelling, so he had us head to the children's hospital next for an echocardiogram.  We wrapped up the day with a trip to Build A Bear for Noah.

We don't have the results of the echo yet and the nurse will be doing the labs tomorrow.  Over the weekend, he's been dealing with increasing pain and the bolus on his pain pump was increased today.   I think we've got a handle on the pain right now as he's been sleeping for a few hours.

In happier news, we've prayerfully decided to move ahead on a long-time dream . . . creating a charitable foundation as a legacy for Noah.  We've spoken with close friends and family, and with Noah of course, and have decided to form a 501 (c) 3 dedicated to offering a variety of tangible and personal supports to children with mito, their parents, and their siblings.  We have a lot of VERY exciting ideas and are happy to be moving ahead.  It's important to us to get things rolling right now while Noah is still able to offer input - and some of our neatest ideas have come right from him!!  We plan to file our articles of incorporation this week then move ahead with the 501 (c) 3 process so that we can start fundraising.  We'll be sure to share full details as things firm up, and in the meantime would ask that all you pray for the Lord's blessing on this project.  If any of you feel led to participate in any way (you don't have to be local!) feel free to email or message me on FB.

I want to extend a huge thank you to those who have taken the time to post FB updates in the comments section.  I feel badly about not posting here as often, but sometimes when things are moving very quickly it is easier just to post a short fast status update on FB.

In all of these ups and downs, we've been so thankful to be children of a God Who never changes and Who loves and cares for us all so much.  I don't know how we could walk this walk without Him.

Blessings,
Kate

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Noah 101

(This is copied directly from Facebook for those who prefer to read it here.)

A lot of people who've been praying for Noah are very new to him and his story.  We've gotten a lot of sweet suggestions as well as a lot of questions, so here's the "Reader's Digest" version of Noah's underlying condition and what it means for him.  This is by NO means exhaustive and is just very abbreviated run down.

Noah's primary diagnosis is mitochondrial encephalomyopathy.  We all have mitochondria in our cells and they are responsible for creating energy for cells (and therefore our body systems) to function.  Noah has a genetic defect in his mitochondria.  It was present at conception and cannot be fixed or reversed.  Because his mitochondria don't function correctly, his body is like a city without enough power for the grid.  On a good day, just living and growing takes a toll on his body because of that power deficit, and if he is sick (or even too tired or too hot or too cold), the additional power diverted to cover the crisis means there will be a power outage somewhere else.

Noah hasn't had enough power to run his GI system since he was a baby, so he has a central line (large, semi-permanent IV access surgically implanted in his chest) called a Broviac.  He receives all of his nutrition through that line in the form of TPN.  The TPN provides all of his calories, protein, carbs, vitamins, etc. directly into his blood stream.  While he could not live without TPN, it also puts him at serious risk for sepsis and for liver failure.

A year ago his GI system shut down completely as the result of a simple upper respiratory virus. While the respiratory system and GI system could be considered unrelated, the power drain of the virus diverted power from his gut and shut it down.  This is probably THE VERY hardest thing for people to understand - Noah cannot eat.  Not at all.  He cannot get ANY nutrition through his gut (stomach, intestines, etc.)  He cannot get ANY medicine through his gut.  We would love to give him nutritional supplements, but we cannot.  He has no use of his gut at all.  His intestines are literally falling apart inside him.  They ooze blood continually and blood, bile, and gastric juices back up into his stomach and drain out of a surgically implanted drain in his stomach that drains into a bag.  If he takes a sip of a drink, or a bite of something "liquid" like ice cream, it immediately. instantly drains out into that bag.  If he is thirsty, he could drink a gallon and never quench his thirst because it all drains out of his stomach into that bag instantly.

Noah gets a lot of IV medicine for pain (migraines, nerve pain, and global, all-over pain).  He also gets IV medicine to control nausea/retching, gastric acid, force his kidneys to make urine, and much more.  He is affected in other body systems.  His bladder no longer works, so he has a supra-pubic catheter to keep his bladder drained.  This is not the typical kind of catheter that most people think of - it is surgically implanted right under his belly button and is changed out once a month.

His bone marrow is affected and he can no longer make enough red blood cells, so he gets a transfusion every two weeks on average.

His overall energy is very low and he is in bed most of the time.  He can only walk short distances and uses a wheelchair when he's out of the house.  He has at least 3 and usually 4 IV pumps running at all times and is also hooked up to his stomach drain bag and bladder drain bag, so it is difficult for him to move around much.

A couple of days before Christmas Noah caught a simple virus from one of his siblings and nearly died.  He began third-spacing (fluid was leaking out of his blood vessels into his tissues) and his lungs were filling up with fluid.  He was having a lot of bleeding from all of his tubes and lines as well as petechial hemorrhaging all over his body.  He is also dealing with MRSA in his bladder and is receiving IV antibiotics for this infection.  Every illness leaves Noah with a worse baseline than he had before the illness, and the total fall-out from this latest round of illness has yet to be fully seen.

Noah has been a hospice patient since this fall.  In our state (SC), pediatric hospice patients can still receive life-saving and life-extending care, and we are still treating infections and taking other steps to help Noah fight until he decides that this fight is over.  He has fought a long, hard fight - 2011 alone brought 16 hospitalizations, 7 ambulance rides, 4 Angel Flights, 5 surgeries, and much more.  In spite of everything, Noah is an incredibly bright, cheerful, happy boy who almost never acts as sick as he is and who never complains.  He loves dragons, octopuses, Angry Birds, dinosuars, volcanoes, and anything to do with Egypt.  He is our seventh (out of eight) child and is adored by his entire family.

No matter how much we love him, we recognize that he is ultimately God's child, and we trust him to the One who loves him even more than we do.  Noah has a beautiful, child-like faith and has great peace about heaven.  We see our job as being responsible to take the best possible care of him here on earth, then trust the Lord with him when it is time for Noah to go home with Jesus.

In addition to writing about Noah on Facebook (www.facebook.com/kate.estes), I keep a blog about Noah at www.prayingfornoah.com.

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Crossroads

We are at a bit of a crossroads with Noah.  When you look at him, he "looks" better.  His vitals are decent, and he's awake and alert a few hours a day.   However, his urine cultures indicate that his bladder is very intensely infected with MRSA.

We still believe that this crisis was at least initially caused by the same virus that his siblings had.  His initial labs looked viral, and this would fit with the fact that he's starting to feel better.  Unfortunately, his newest labs look like the MRSA is trying to head into his bloodstream and make him very, very sick.  The improvement we're seeing could be one of two things:

1.  He could be recovering from the virus, we could have caught the MRSA in time, and the high-powered antibiotics we started are effectively beating back the MRSA.

2.  He could very well be sitting in the eye of the storm so to speak.  We could be in a little lull where the virus is abating and the MRSA hasn't yet had time to build up speed and make him terribly ill.

There is really no way to know, and nothing we can do except pray and be thankful that **right now** he's having some short, happy, alert times.  We switched to a very powerful antibiotic once we knew about the MRSA, and there is nothing else we can do medically at this point.

Right now the biggest changes in his labs are worsening liver numbers, worsening kidney numbers, worsening infection markers, and at least one dangerously low blood sugar (so now we are doing finger sticks).  His PT/PTT and platelets are better, he's less swollen, and most of the bleeding is improved.

We've been cautioned to keep in mind that he is just one bacterial surge away from being very gravely ill, and that even if he is on the mend, he's unlikely to return to his previous (poor) baseline.  We know he is in the end stages of his underlying mitochondrial disease, and we know that he could be terribly sick just minutes from now.  (It feels so odd to be writing that, as just a week ago I was blogging about the fact that he could be getting sick, and minutes later he was so very ill.)  We're choosing to try to walk a balanced path - giving thanks for how he feels right now this minute and just enjoying and soaking up every bit of it, but also being mindful to do some things that are important but easy to put off - handprints, memory making, etc.  We've also finalized most of his funeral plans as it will only be harder to make those choices once he has gone home.  Honestly, I feel pretty optimistic right now.  Whenever he starts feeling better, it's easy to be in denial about how quickly things can turn, but I think this is more than denial.  For the first time in a week, I feel hopeful.

I hope I've conveyed this all clearly enough.  It's not time to start celebrating but it's not time to start mourning yet either.  All I can ask from you is what you have all so freely given - your heartfelt prayers for our little guy that he would either fight his way back to us once more or that he would fly to Jesus without suffering.

I'll leave you with this.  Noah's favorite song is "You Never Let Go" as sung by the David Crowder Band.  (Actually, he really loves it as sung by our worship team, but the David Crowder Band version is the song he loves as opposed to a different song of the same title.)  He sings this so often when he is sick or scared, but until last night I've never caught him on tape.  Last night he was awake and resting for a little while and I managed to catch this before he went back to sleep.






Here is the "real" version by the David Crowder Band in case you haven't heard it.  It is so precious to us that the Lord would use this perfect song to minister to Noah.  As Jeff told someone today, Noah doesn't just sing this song, he **lives** it!






Blessings,
Kate

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