Our Quiverfull

Jul. 2, 2009

quick prayer request :-)

I couldn't say anything until now, and it's been killing me to keep quiet LOL, but Hannah's big birthday gift is that we are flying her best friend Pip in from Virginia today. Pip is due to land in a couple of hours, and we are surprising Hannah here at the hospital instead of at home. We have nurses and doctors and Child Life all in on the big surprise. PLEASE pray for safety for Pip, for on-time flights,for Jeff's sanity as he takes 7 children to the airport to pick Pip up,:-) and for the surprise to go off without a hitch!!!!

If all goes well, we will ALL go home later this afternoon!

Blessings,
Kate

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Jul. 1, 2009

Not today

Posted in Noah Updates

Gotta make this one short and to the point. Noah seems determined to keep us on our toes. In order to go home, he has to be fever-free for 24 hours, but he is popping one or two low-grade fevers every day. It's causing some concern here and the doctors have added another IV antibiotic to his regimen. No one is really sure why he's starting in with these fevers now *after* being on IV antibiotics when he didn't have fevers before. Leave it to Noah . . . .

He's also getting noticeably more tired and draggy each day. His hemoglobin is holding steady, so anemia isn't the problem. It could be that, thanks to his mito, his little body is just getting really weary from the constant infection - he's had this infection for weeks now. We've been told that it's not a problem to take him to the cookout/fireworks/etc. that we have planned for the 4th (assuming we are discharged!). He may sleep through a lot of it, but the doctors don't feel that the busy-ness of the day would cause a setback or anything.

He is still having drainage from around his line, so we are doing another set of cultures. If they come back still positive for MRSA, he will need to stay on antibiotics for longer than the current 2 week projection. Until his line looks better, we will need to do daily dressing changes.

I'm still dealing with this cough/tight chest, but I'm managing fine as long as I use an inhaler. I don't feel sick per se - just coughing and wheezing. I think allergies have a lot to do with it!

Noah has a relatively long break in his meds schedule tomorrow starting at about 3 PM - if he can stay fever-free until then, we get to go home! The break should be long enough to allow us to get home and get all of his meds/TPN delivered to the house before we have to hook him up again. Please join us in praying that this will work out smoothly if it is the Lord's will for Noah to go home tomorrow!!

Noah is having fun sitting in bed painting . . . maybe a bit too much fun, so I need to scoot.

Blessings,
Kate

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Jun. 29, 2009

teetering

Posted in Noah Updates

All of the doctors are working hard on a plan to get Noah home this week. I asked what criteria Noah had to meet to be sure that the plan worked, the doctor said, "Not get worse." In typical Noah fashion,we are now teetering on the brink of "worse" in several areas. His hemoglobin is falling, his white count tanked, his line site might be oozing a little more than it was before, and he spiked a fever tonight. It wasn't a really high fever, but it was the first official fever he's had this admission. It is really a very great relief to know that none of this is a mystery to the Great Phsysician.

Noah has also definitely felt more draggy today. The whole wagon issue was pretty much a non-issue because he didn't even ask to leave the room until after 7 this evening. Fortunately, I had "backup" at that point to help with the wagon and we took Noah outside to the hospital garden. It was cool and pleasant and he enjoyed walking the paths, but most of the time he just wanted to sit.

All sorts of labs are being repeated and we should have a more clear picture of "the plan" by sometime tomorrow. We still don't know what is growing in his line, and that information could be very important.

The bottom line on the MRSA is that it is likely to hang around sticking to his line in tiny amounts even after we finish his IV antibiotics, and it is likely to flare up around his line again. We can't know if it will flare up in a mild way like these last two times, or if it will hit his blood and knock him flat. The very good news is that he is no danger to anyone around him. MRSA is everywhere now, and we are all frequently exposed to it with no ill effects. Noah's infection is completely contained by his dressing so he has absolutely no way to get his hands on it and spread it. There is no airborne transmission unless the patient has MRSA in their sputum and they are coughing. This is something you would see in a respiratory patient, not in Noah. The doctors have emphasized that the other children are in NO danger from Noah and that he will not spread this to his siblings, friends, etc.

He's getting ready for his benadryl, so I need to cut this short. I'll update when I can tomorrow!

Blessings,
Kate

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Jun. 28, 2009

REALLY big surprise

Yesterday I posted about how surprised I was to find out that Noah had a line infection. Today we got the results from cultures taken from the discharge around Noah's line. The infection in Noah's chest is MRSA - the antibiotic-resistant super bug. I am absolutely stunned. We still don't know what is growing out of Noah's line. We know it is a Staph A,which means that it, too, could be MRSA.   We expect to have the line bug identified by tomorrow.

Of course, today is Sunday, so I won't really get to speak to Noah's team until tomorrow. I don't know what this means for Noah or his line. He is being treated with vancomycin which is an appropriate choice for MRSA and which could clear the infection. The highly distressing aspect of this is that we already treated this infection with vancomycin a couple of weeks ago and it obviously didn't get better at that point - in fact, it may have spread to his line.

The balancing act here is to put Noah's safety and well-being first, but at the same time be as expedient as possible. For example, he's looking paler, so I want a CBC done tomorrow - if he needs a transfusion, I want to do it ASAP rather than finding out on our discharge day that he needs one. If the line needs to be pulled, I want it done as quickly as possible. I don't want to shortchange Noah in ANY way, but I don't want to dawdle either.   I had a difficult time communicating this to the doctors today but am confident that the regular team will understand when we talk tomorrow.

Specific prayer requests are that we would be able to clear this infection, that things would be done in an expedient and orderly fashion, and that Noah will feel better. He is hurting, itching, and weary. He has huge hive-like welts all over and he woke up constantly last night because he was so miserable. His benadryl has been increased to every 6 hours instead of every 8 hours, and the dose has also been increased. This has provided some relief but he is still uncomfortable. He is also VERY frustrated because he is now restricted from doing most of his favorite things. Due to the MRSA, he can leave the room but can only do so in a wagon. He can't touch things outside of the room. For example, he can go to the playroom, but can't play with the train table, or go down the slide, or play on the gym mats. He can only play with toys that he can use while in the wagon. He can't push the buttons on the elevator, which is a BIG deal for him - elevator riding is a favorite pasttime, and pushing the buttons is the best part. He can go down to the fountain, which he loves, and I was able to pick up some rolls of pennies so he has a big stash of money to throw in the water. Right now he isn't hooked up to any pumps (for a couple of hours), so pulling him around isn't too much of a big deal. Tonight and tomorrow will be a different story. It's nearly impossible for one person to pull an unweildy wagon while pushing his very heavily loaded IV pump. Please pray that he will be content and easily amused.

In the midst of this unsettling and somewhat scary news, I am surrounded by the clear and obvious hand of God. He has been showing up in big and amazing ways, perhaps because He knew that I would need to see Him at work before this happened. Here are just some examples of what has happened over the last week or so:

** We've always wanted a game room but never had the space or the money for game tables. I've had an antique table in our family room and I had wanted to put it away somewhere to protect it, but we had no storage space. Jeff and our employee Matt did a bunch of reorganizing in the basement (not knowing I needed a place for the table) and ended up clearing out the PERFECT place for this table. At the same time, some friends called and told us they had an airhockey table that they didn't need and would like to give us. Had they called earlier, I would have said that we had no space, but the timing was perfect and we now have a lovely wooden air hockey table in our family room - the kids are having a blast!

** When Noah is in the hospital, he can watch all the DVD's he wants, but his viewing time at home is strictly limited. Because he can get to our DVD player, it has been hard to enforce this standard at home. He's confused by the double standard and it is causing problems. We'd looked at armoire-style entertainment centers but couldn't even think of affording them.
      Our church just hosted a Freecycle day, which was like a yardsale but all items were free. This was primarily an outreach to the needy. Jeff and I had stuff to donate but every time we wanted to go drop things off at the storage unit at church, something would come up and we wouldn't be able to get there. The day that we finally got to church with our stuff, they were pulling things out of the storage unit and starting to sort the in the gym. The first thing to meet my eyes was an antique armoire! I sort of gasped and said, "That is just what we have needed!" When the Freecycle coordinators found out why I wanted/needed it so much, they put our name on it and arranged to have it delivered to our home! Jeff added shelves and we now have a beautiful way to store our DVD player/tv set - and it has child locks so Noah can't get into it!

**The night after we got the armoire, I was in bed looking at Noah's little dresser that we keep in our room. It's a changing table with three very small drawers, and while it worked quite well for newborn Noah's clothes, it simply won't hold his toddler clothes and Mary Faith's baby clothes. They simply won't fit, so we always have a couple of laundry baskets of their clothes - not the most attractive look for the bedroom! Without saying anything to anyone, I asked the Lord to just please drop a dresser in my lap - and to do it in the next day or two so I could donate the changing table to the Freecycle day. The next morning, one of Noah's therapists came by and told me that she had a gorgeous girl's bedroom suite she didn't need and she was convinced that I was supposed to have it. It consisted of a twin bed (which we stored for Sarah), a mirror, and TWO DRESSERS! Both of them fit on the wall in our room where we had the changing table, and now Noah and Mary Faith each have their own dressers. When we spoke the Freecyle coordinator, we found out that a lady in our church had just learned she was expecting. We called her and found out that she is in need of a changing table and dresser for her new baby, so we were able to bless her with the one we no longer need now.

** This summer, my mom got the neatest cup from Starbucks. It looks just like one of the clear plastic disposable cups that Starbucks uses for their cold drinks, but it is actually an insulated, double-walled cup with a screw-on lid and reusable hard plastic straw. It is a seriously cute cup. Now, I very seldom get excited about "stuff" or feel like I have to have the latest greatest thing, but I fell in love with this cup. After all, I'd been wanting an insulated and spill proof cup for the car and the hospital, and this fit the bill . . . but I didn't have the money to buy one for myself. After a few weeks, I got a Starbucks gift card and raced down to Starbucks to buy the cup, but they were sold out and weren't able to get any more. :-( I went home and checked the website, but they were sold out too.
     Yesterday I was talking to my mom about the cup - she wanted to know if I had ever bought one, so I told her my story. It wasn't a big deal - just a cup - just one of those little things.   A couple hours after I spoke with my mom, Hannah called me to tell me that a blog reader from Atlanta had come to our house on her way through town and had brought a box of goodies to us. The box contained a Bi-Lo gift card, fun stuff for the kids, etc. Hannah then casually mentioned that the box also contained a Starbucks gift card in a "neat plastic cup - you know, like the one Fifi (what the kids call my mom) has." She just breezed past it, not realizing HOW much I had wanted a cup like that. I almost fell off my chair and told her to back up and tell me more about the cup. :-) Yep, it was THE CUP.

It defies comprehension to think that the Creator of the universe would care so much about me that He would use someone to give me a simple little cup that I fancied. Nothing is too big for Him. Nothing is too small for him. He is big enough for anything we need, but never too big or too busy to be intimately involved in every aspect of our lives. He loves us just that much. He loves Noah just that much. I don't know what tomorrow will bring, or if my desires and plans for this week will play out "my" way, but that's OK. I know the One who does know, and I trust his Hand.

Blessings,
Kate
P.S. Some of you asked about cards for Hannah - I know she would LOVE to get some. :-) You can send her mail to:
Hannah Grace Estes
c/o Hands and Hearts
206 Yosemite Dr.
Greenwood, SC 29649

She doesn't have her own email address, but you can email her at our address using the button on the sidebar.

Thank you for asking!

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Jun. 27, 2009

big surprise

Posted in Noah Updates

Last night was fairly uneventful and I slept better than I thought I would - thank you for your prayers!

I was very surprised this morning when the doctor came in and told me that Noah's blood cultures are growing out positive! It's obvious that Noah doesn't feel good, but it's equally obvious that he doesn't feel terrible either, and he hasn't had any real fevers. He is typically very seriously sick when he has a line infection (infection in his blood in the line as opposed to a deep tissue infection around the line).

The first line infection Noah had started with an infection around the line, then spread to his blood. He never ran a fever or acted terribly sick with that infection either. Actually, I guess I should say that he was already terribly sick but didn't act any more sick with the infection. He ended up losing his line to that infection very quickly.

They are fighting hard to keep this line and clear the infection. It must have just been developing and we must have come here right in the nick of time - none of his labs looked bad when we came in, and I never would have guessed that he had a line infection.

Please pray for wisdom about treatment options and plans. Saturday (July 4th) is Hannah's 16th birthday and we have a LOT of big fun stuff planned. In my mind, I need to hurry up and get back home to get ready for everything. (I left in the middle of BIG spring cleaning, remember?) I'm really at peace, though,and I know beyond a shadow of a doubt that God's timing is perfect that this will all work out to His glory.

I was asked about Noah's spirits. He usually loves to come to the hospital (how sad is that) and will ask to come if he's been home a while. He seemed really happy to be coming this time, but as we got closer to the hospital he started sobbing and asking to go back to "mine own house." He cried for a long time after we arrived and kept asking for his own bed, but before long several dear friends showed up. This was a huge encouragement to him and to me! Thursday night was a long night with a long visit to the treatment room for all sorts of unpleasant procedures, and it was such a blessing for Noah and I to be surrounded by people who love us. His spirits are better, but he definitely isn't his bouncy self. He was content to rest in bed and watch TV this morning until a Child Life volunteer came in and offered to take him to the playroom so I could have a break. :-) I was stunned that he went - he always insists on my coming along. I think he feels just sick enough that he was willing to go along without complaint. He loves to go in and play with the train table. Child Life also has a tub and a bunch of rubber ducks set aside just for him. He LOVES to put water in the tub and play with the ducks. He even brought an alligator and a Nemo toy with him to the hospital in anticipation of putting them in the water as well.

I need to go and take advantage of my break. Thank you so much for your prayers and comments. I read every one of them and they are a blessing.

Blessings,
Kate

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Jun. 26, 2009

quick update

Posted in Noah Updates

I've just got a second here - there isn't much to report. All we can do is stay the course and wait for cultures and labs. Noah isn't scarily sick, but his chest does look yucky and he once again has horrific looking red circles going from his cheekbones all the way around his eyes up to his eyebrows. Everyone says they've never seen anything like it . . . .typical Noah stuff.

I hope I'll have more news tomorrow. My chest is feeling much better but I am still struggling with a lot of coughing at night. Thank you so much for your prayers!!

Blessings,
Kate

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Jun. 25, 2009

Here we go AGAIN

Posted in Noah Updates

I've been guilty lately of complaining that Noah seems to have settled into a "three weeks at home before heading to the hospital" schedule.

Silly me.

RIght now, I'd be happy for three weeks, but I'm so very sorry to say that we are heading back right now. Noah's chest infection never completely cleared up, but it kept getting better so no one worried. He was off his game all day - just kind of draggy, pale, and subdued. This afternoon I took a peek at his line, and it was definitely WORSE. It's redder, hotter, more swollen, and oozy. I called our family doctor who said to start packing while he called us in for a direct admission (no ER). I'm packed and just waiting for Jeff to wrap up a few things before we can head out.

I've been meaning to update but have been truly incredibly busy. We've been moving rooms around (well, not rooms - the stuff IN the rooms), creating a home office for Jeff, spring cleaning (tacking some super big projects), etc. I've also been fighting some sort of nasty chest cold/bronchitis/asthma flare up. I was planning to give up and see our doctor tomorrow . . . guess I shouldn't have put it off! I do feel a bit better this afternoon but am tired from long nights of non-stop coughing. When you pray for Noah, please pray that I'll start feeling much better really fast.

I need to run and will update later.

Blessings,
Kate

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Jun. 13, 2009

Home sweet home

Posted in Noah Updates

We were able to come home today! Noah's chest is still pretty yucky looking, but since it is improving and since we are fully capable of doing IV antibiotics at home, there was no good reason to stay. The only downside is that Noah is close to needing a transfusion - he gets transfused below 10, and right now he is 10.6. As Maxwell Smart (Agent 86) would say, "missed it by THAT much." It's not that we WANT Noah to need a transfusion, but since we know that he is nearly ready for one, it would have been convenient to do it while we were there. At his current rate, he's about a week or week and a half away from hitting that threshold - and I don't want him to be admitted again so soon. Ugh.

We got home at about 4 this afternoon and I've already enjoyed snuggling Mary Faith, listened to 6 children all tell me about all of the exciting things they did this week, admired the molding Jeff put down in the new playroom, made rice krispy treats with Matthew, and worked in the garden with Jeff and the younger half of the children. I've got Jeff's favorite meal thawing on the counter (my homemade Thai peanut chicken) and am looking forward to snuggling up with him and finishing the Sherlock Holmes movie we meant to have finished Monday. He was such a sweetie and had clean sheets and a fresh clean nightie waiting for me - I have to tell you I was pretty tempted to skip all of the above and just climb into that oh-so-inviting bed when I walked in the door! :-) I did sleep MUCH better last night - thank you for praying!

Noah still needs your prayers for this infection. He doesn't feel awful but it's easy to tell at a glance that it is taking a toll on him. We also need prayer for perfect timing on his next transfusion. It's just SO much easier when he is already inpatient, but we don't want him getting sick, of course! Jeff and I need prayers as adding IV antibiotics is a considerable amount of extra work and requires very precise timing and coordination of different drugs. I'm not sure how church will work tomorrow (IF church will work tomorrow) because of the sheer number of drugs that will need to be started and stopped during church time - including IV benadryl which conks Noah right out. We're still praying about that one.

Off to heat up peanut chicken for my sweetie. I'm really glad I made extra and froze it last time!

Blessings,
Kate

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Jun. 12, 2009

Looking better

Posted in Noah Updates

Noah's chest is looking MUCH better - still yucky, but vastly improved. He still complains that it hurts but I'm confident that the pain will go away as he heals.

Noah still doesn't feel up to par. I wouldn't be surprised if he were due for a transfusion as that would expain his fatigue.   All of the other children came up to visit yesterday and that definitely lifted his spirits (and mine!)

Please pray for Noah's sleep schedule. He gets IV benadryl before each round of antibiotics. The benadryl typically puts him right to sleep, but unfortunately we are on a less-than-optimal schedule. He's getting benadyrl in the morning too early for a nap, then again about 6 Pm which is too late for a nap and too early for bedtime. We are working on shifting things but it is slow going due to the nature of the antibiotics he's on. He ends up very keyed up, cranky, and miserable in the late afternoon due to this schedule. Yesterday he feel asleep at 6:30 with the benadryl and he was sooooooo tired that I was sure that he would just sleep through night, but he was awakened at 8:30 for a finger stick. :-( It had to be done at that specific time so it wasn't that anyone did anything wrong, btw. He woke up crying and had slept just long enough that he couldn't go back to sleep - but was too tired to be happy or pleasant. He spent the next several hours whining and climbing/rolling all over me.   The two of us could really use a good night's sleep and I covet your prayers to that end! We have a different style of bed than usual (Noah wants me to sleep with him) and it is extremely uncomfortable and loud. Between the bed and the late night wrestling session with my very strong toddler, I woke up very sore this morning. I am so thankful that I tossed one of those little disposable, single use heating pads in my bag. (I can't remember the name of those things - thermal care or something). It had been sitting on my bathroom shelf and I just "happened" to see it and decide to put it in my hospital bag. I put it on my back and it feels soooooo good. I don't even know why we had it - they are kind of pricey and we have reusable heating pads already - but I am thankful that the Lord directed my eyes to it in the hubub of packing. I'm going to see if I can pick up another package of them to keep in my hospital bag.

I wanted to answer a couple of questions from comments. First, Noah wears a size 3T. He still has some 2T things that he wears, but if I buy new things I buy 3T now.    Second, yes, I do read every single comment on the blog. :-) Most of the children read at least most of them, and Jeff reads a lot of them. Sitting with my laptop to read comments is my favorite treat when I get a quiet moment.   Right now I can also read email on my laptop, but not easily send it. Jeff is going to be changing things so that my personal email address goes to my laptop, allowing me to read and send more easily. (Right now I read them online where they are stored by our spam filter.)

Third, the address for Noah mail is:

Noah Estes
c/o Hands and Hearts
206 Yosemite Dr.
Greenwood, SC 29649

I have a HUGE favor to ask all of you. We've received quite a few pictures for Noah's Prayer Warrior Wall, and a number of those pictures have come with a little something for Noah - anything from a pacakge of stickers (he loves stickers!) to entire packages of goodies for him. I saved all of the boxes/envelopes with little reminders of what came in each one so that I could send a thank you . . . . until a "helpful" child assumed that it was all trash, emptied the boxes, and took the empty boxes down for garbage collection! I want VERY much to thank each of you (even though sometimes the best I can manage is a thank you here on the blog), so if you have sent anything to Noah over the last several weeks and you haven't heard a "thank you," would you please drop me an email??!!! I know I wouldn't want to come across as begging for thanks if I sent somehting to someone, but we really do want to set this straight. We are so deeply, deeply appreciative of everything that is sent to him and it grieves me very much not to be able to say thank you properly - it is the very least I can do after so many of you have so sweetly given to Noah. (I can say that EVERY single picture and package has been met with absolute delight by Noah - if he sees the mail coming in the house, he yells, "Der's zebwas in it!" :-) It just makes his day to get mail. I am resolved to make a document on the computer so I can list who sent what without worrying about the boxes so we avoid this in the future.

*** Live, breaking, prayer request update :-) **** Our angelic nurse Gail (one of our favorites!!) just came in, sat on the bed, and informed me that it was miserably uncomfortable and that I didn't need to be sleeping on it. She has removed the bed (Noah waved and said, "bye, bye, bad bed!") and is getting us a better one. Yay!   Now all we have to do is persuade Noah to SLEEP in it LOL.

Blessings,
Kate

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Jun. 10, 2009

And still we wait . . .

Posted in Noah Updates

This is just such a DIFFERENT hospitalization for us. Noah doesn't feel awful, but he doesn't feel good. He isn't running a high fever, but his temp is elevated for him. His chest looks a little worse, but surgery decided that he isn't sick enough for a new line - which leaves me both completely relieved and a little frustrated. Since Noah is on such big gun antibiotics, the infection shouldn't break loose, hit his bloodstream, and wreak havoc . . . but by the same token his chest shouldn't be looking worse.

He's just stuck right in the middle, not healthy enough to send home and not sick enough for any big intervention. I have a lot of questions for the doctors in the morning, and when I get more answers I'll post again. Until then, we wait for him to get better or worse.

Blessings,
Kate

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Jun. 9, 2009

The waiting game

Posted in Noah Updates

Noah was admitted to the hospital last night. The ER doc took one look at his chest and said she was sending him upstairs - I can't say we were surprised. He was immediately started on two of the big-gun IV antibiotics to cover both gram positive and gram negative bugs.

Right now, we are just watching and waiting. The tissue around Noah's central line is clearly VERY inflamed and everyone's best guess is that it is cellulitis (a deep tissue infection). The two big questions are whether we can clear the infection without pulling the line, and whether the infection will (or has) spread and become systemic. We are still waiting for the results of the blood cultures. Noah still hasn't totally bounced back from his last terrible infection and I'm concerned about the ramifications of yet another infection so soon.

Noah is obviously sick, but not "scary sick." He is very, very tired - slept in until almost 1:00 this afternoon. He's been awake for about 30 minutes and has been lying in bed watching Nemo (of course!). He's definitely much sicker than he was yesterday. At some point this morning he started to develop dark red circles around his eyes like he did last time he was sick. It is pretty dramatic looking but no one really knows what it means. He hasn't spiked any high fevers, which is really good. There is a "Donald Duck's Birthday Party" scheduled in the playroom at 3:00 and I am hoping he will feel well enough to at least go check things out.

Noah's chest is looking worse and worse each time we check it. He's only been on IV antibiotics for about 12 hours (2 doses each of both drugs) so we are still hoping that this infection will reverse course. We've seen several doctors but are still waiting for ID and surgery - the two doctors who will decide the fate of the line.

You all can't even imagine how much your prayers and comments/calls mean to me. I'm weary of all of this but so encouraged and uplifted by all of you. Moses had two wonderful friends holding up his arms, and I am beyond blessed to have thousands of you holding up mine. I've been clinging to the various scripture verses that several of you posted and know that God's strength can be made perfect in my weakness.

Blessings,
Kate

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Jun. 8, 2009

Going back to the hospital again

Posted in Noah Updates

I planned to sit down and write a HAPPY post this evening. I was going to write about Noah playing in the wading pool, moving to a toddler bed, and enjoying David's birthday yesterday. I was going to tell you how, when I hugged him and called him a "sweet baby," he glared at me and said, "I not baby more." :-)

I'm not happy anymore, though. I'm off to the hospital with Noah again, and I don't want to go. Noah's central line insertion site is angry red, inflamed, hot, and swollen. We were told to come on in and plan to stay. I'm tired and I wanted to get into bed early tonight, watch a movie with Jeff, and get a good night's sleep.

You all know the score by now. I'm not happy, and I think happiness is unrealistic for me right now. I am, however, clinging to joy by the skin of my teeth. I've barely clutched peace and I'm pulling it over me like a blanket to hide under. I've grabbed hold of the knowledge of my son's Creator and don't plan on letting go.

Please pray for us. I'll update when I know more. There is the slimmest of chances that the ER docs will send us home (insert deranged laughter here). Please pray that things happen FAST. Heading out at this hour usually equals landing in bed at zero dark thirty, and I really am awfully tired just now. Please pray that we don't lose this line. Please ask those you know to pray with you. After last time, I'm fighting not to give in to fear (OK, terror).

Blessings,
Kate
---- I've got Jeff's cell - 864-337-3725. If you need to reach him, he's got mine - 864-992-3193

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Jun. 4, 2009

so hard to explain

I’ve put off posting because I want to share some things that are hard to explain - - so hard that I keep writing posts then deleting them. We all knew that during this last hospitalization, Noah was much sicker than he had ever been. I was worried and exhausted, and when all of Noah’s labs were so crazy I ended up with some sort of overriding concern that we were looking at TPN-induced liver failure. At one point a doctor told me that Noah had apparently developed hemophagocytic syndrome which was the explanation for the crazy labs. When she told me this, I did something very unusual - something unheard of for me. I did NOTHING. I didn’t ask a single question, because all I “heard” was that we weren’t dealing with a TPN issue. I was just so thankful and so relieved and I didn’t even care what this strange, hard to pronounce “syndrome” was.

Noah’s labs (the ones we check) all normalized quickly once we got home. His triglycerides went from 488 to 39 and everything else was looking great, so I continued to cruise along with relief that all appeared well. A week and a half ago we had an appointment with our brilliant infectious disease doctor and she also brought up hemophagocytic syndrome. She told me that Noah had apparently developed it and that it was responsible for his crazy labs AND the severity of this latest illness.

Here is where it gets hard to explain. I don’t understand this well. Our brilliant doctor said no one really understands it well. She drew some labs and sent them to a lab in Ohio (apparently “the” specialist in hemophagocytic syndrome is in Ohio.) The incidence of hemophagocytic syndrome is 1.2 in a million, which is probably part of the reason that it is so poorly understood. Leave it to Noah . . .

What I “think” I know is this:

Even though Noah’s regular labs look great right now, he could still be experiencing effects of hemophagocytic syndrome. The labs we sent off could shed light on this.

Any time Noah is sick this could happen/will happen (we are hazy on this) again. This has the possibility to be very grave for Noah.

It appears that the two choices are 1) the hemophagocytic syndrome is in remission right now but can/will flare up when he gets sick again. At any point it could stop being in remission and become a constant issue OR 2) the hemophagocytic syndrome is not in remission right now and it is destroying his bone marrow and it will/can really flare up and get worse anytime Noah gets sick. We would like option three, “none of the above,” but there does not appear to be an option three.

Once we know what is going on, either because the labs show a problem or because he gets sick and this happens again, we will need to consult with hemotology/oncology. This is not cancer, but may need to be treated as cancer. We are NOT at the point of sitting down, discussing options, and making decisions - but when that time comes we may have some extremely difficult decisions to make.

Those of you who have followed Noah understand that there is no cure for his disease. It is not treatable but it is progressive. All we can do is put out fires and try to manage individual issues as they develop. We’ve always known that one day we would face a fire that we cannot put out. It’s possible that hemophagocytic syndrome is that fire. It’s also possible (we hope) that Noah will amaze us all once again and that somehow this won’t be as bad as we think it will be. In our favor is the fact that this was a relatively mild presentation - even though hemophagocytic syndrome tends to get worse and worse, it seems to me that starting off mild is a good thing.

What we DO know is that none of this has caught the Lord by surprise, and none of it is out of His control. We know that He loves Noah with an everlasting love and that He will provide grace and strength and peace and courage as we and Noah need it.

We will update on this situation as we learn more. It may still be a couple of weeks before we get those labs back from Ohio. We covet your prayers and your comments and only ask that you refrain from negative comments. You are welcome to pray in any way that you feel led, but I am simply not up to dealing with unkind comments right now.

On a much cheerier note, my brilliant Hannah Grace has been having fun teaching herself Photoshop, html, and more. As a practice project, she designed a completely new template/look for this blog. It's about through and the new template should be loaded the next time I post. I just wanted to give you all a heads-up so you don't think you landed on the wrong blog or something!

Noah has gotten quite a few contributions for his Prayer Warrior Wall as well as some lovely care packages lately - I want to share more about both next time I post.

Blessings,

Kate

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May. 18, 2009

Blissfully busy

Posted in Noah Updates

We made it home Friday night and it felt soooo great to all be together again. We changed infusion companies (the company that supplies Noah's drugs, TPN, equipment, supplies, etc.) so there was a bit of a learning curve setting up a new kind of pump and using different types of supplies, but we got to bed at a "decent" hour at last.

We slept in late Saturday (oh, bliss) then somehow ended up having a pillow fight with Noah that eventually involved most of the children. :-) It was great to see him doing something so normal with his siblings, and really - isn't having a pillow fight more fun than making the bed? We got Noah to the shoe store where we were heading two weeks ago when he crashed. He got some spiffy new sandals thanks to a gift card he received at Christmas from his grandparents. He is very proud of those sandals and comments about them several times a day.

After we got shoes, we all headed to a Mennonite strawberry farm about 25 minutes away. We'd been dodging little thundershowers all day and weren't sure if we would get rained out, but the skies were clear (even if the rows were muddy) when we got to the farm. We picked for a while before things opened up and started pouring again. Most of us (the sensible, e.g. femal ones) headed for shelter, but several of the boys thought it was great fun to pick berries in the torrential downpour. We ended up with 10 gallons which made their way into homemade strawberry ice cream Saturday and 40 pints of jam today. Of course, MANY of the berries just made their way right into little mouths all weekend. :-)

It is just so good to be back. I'm tired from all of the jam-making today, but those deep red jars look so utterly beautiful on my table. I did half strawbery and half triple-berry (added some raspberries and blackberries to the strawberries) The children helped with the jam-making (otherwise I would NOT have gotten so many pints done!!!) and we had a great time laughing, talking, listening to the radio, and just being together. My kitchen is nearly de-stickied now - just needs mopping and it will be as good as new. Lucky for me I have some VERY good little moppers around here who will get the floor clean for their tired mama. Jeff has decreed that I need a date tonight, so we are heading out for a "Board of Director's Meeting" which is a fancy way of saying that the business is paying for our dinner date. :-) According to a unanimous vote, I'm supposed to get up and make biscuits in the morning so we can all sample the jam properly for breakfast. I'm looking forward to it myself . . .

Tomorrow I need to address my garden. It went absolutely wild while I was gone. When we planted it not too long ago we prayed for God to bless it and cause it to bring forth abundance. Well, my tomatoes are up taller than their cages and covered with green tomatoes! Everything has just exploded and I have quite a bit of untangling and tying up of the cukes, melons, pumpkins, etc. tomorrow. Everyone kept telling me that I wouldn't believe the garden when I came home. Jeff took me ove to see it (it's at my in-laws house as our home is in all deep shade) on Friday on the way home from the hospital and all I could do was laugh. Here I was concerned that I wasn't around to feed the plants with some compost . . . now I think I'm scared to fertilize it LOL. Jeff and the children ate lots of salads while I was gone and we've done the same since I got back, but we can't pick the lettuce fast enough. What a blessing!!! The children are all so delighted to see how their work is paying off so dramatically.

Noah is having ups and downs. Coming home always overwhelms him and a few times he's asked to go back to the hospital. He's settling in and having fun with his brothers today. He has periods where he is clearly just exhausted and doesn't want to do anything more than lie on the floor, but it is wonderful to see those delighted playtimes between the tired times! He is an amazing child. He's received several cards and pictures for his Prayer Warrior Wall and is really enjoying opening his mail!

My handsome date beckons . . . . I need to go. :-)

Blessings,
Kate
P.S. I keep forgetting to mention that Hannah is doing MUCH better. She isn't using the wrist brace anymore at all. She could use a visit to the chiropractor but is almost back to 100% now. Thank you all so much for praying for her!!!

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May. 14, 2009

We have a plan

Posted in Noah Updates

We have a plan . . . it looks like we are going home tomorrow! Noah still has a LOT of odd stuff going on, but it is either stuff that we can handle at home or it is stuff that no one can do anything about. Under those circumstances, we would just as soon be at home!

The best part of the going home plan is that Noah will not be going home on IV antibiotics. That is sort of a good news/bad news thing - we are tickled pink that we won't be running a very complicated, around the clock IV meds schedule. Unfortunately, one factor in discontinuing the antibiotics is that Noah now has yeast overgrowth in his gut - not good. This can be caused and/or made worse by antibiotics, so it was decided that the risks of the drugs now outweigh the benefits. Noah's infection labs look great and he hasn't had a fever for days. We'll be following him closely and doing lots of labs/blood cultures/etc. for the next several weeks in addition to his regular labs. He is now on Diflucan for the yeast. Poor guy. I do keep forgetting to mention that yes, he does get probiotics at home and in the hospital. When he was eating we also encouraged lots of natural yogurt which he used to love.

Like I said, we're treating the yeast, but the other stuff just sort of is what it is right now. We'll be playing around with his lipids to control the triglycerides - half the usual amount of lipids on alternating nights with no lipids at all on the other nights. It comes down to a waiting game. If any of these new problems were caused by this infection, they should gradually go away on their own. If they don't improve, we will cross those bridges later.

In typical Noah fashion, he *looks* great. He looks much better than anyone would expect considering all he has just been through. He's lost some weight and is quite a bit more tired (and more cranky) than usual, but he really does look good.

He had an uneventful transfusion yesterday. We had planned to transfuse him again today, but we got a decent bump in his hemoglobin from yesterday's transfusion so the doctors decided not to risk another transfusion right on the heels of Monday's reaction.

While it does look like we will be adding one or two daily boluses of IV fluids to his regular schedule, we are VERY thankful that we don't need to do the antibiotics. The fluid boluses will probably run for an hour each, which is two more hours a day of being hooked up, but we can deal with that and will try to do one bolus during nap time each day.

You all have been on the ball with the Prayer Warrior Wall photos - Jeff said we have already recieved several. I know Noah will get a kick out of seeing them, and I'm looking forward to it also. If you need the address again, it's:
Noah Estes
c/o Hands and Hearts
206 Yosemite Dr.
Greenwood, SC 29649

We want to extend our deepest appreciation to all of you who have walked and prayed and wept with us over the last couple of weeks. This hospitalization was a hard one for Noah and for me, and every prayer and every word of comfort/support/encouragement really did (still does) make a difference. We know that we are very, very blessed to have EACH of you in our lives!

Blessings,
Kate

PS As usual on discharge days, I can't *promise* that I will update tomorrow unless there is a problem. Getting out of here is a lot of work, and once I get home I have a bunch of wonderful children (and the world's best husband) who will need lots of TLC and attention. :-)

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May. 12, 2009

Thinking about home

Posted in Noah Updates

****** I wrote this post yesterday (Monday), but things got crazy here before I could send it. I've got new info that I've added to the bottom of this post.*******

This morning the idea of going home was discussed for the first time since we came in! We aren't ready to go and it will be at least a few more days, but I'm blown away by the fact that we can even discuss it already. Noah's strength and resilience never cease to amaze me.

Again, like yesterday, Noah looks a bit better and his CRP is steadily going down. That is good. All of his other labs are, well, not good. We ran his lipids (fats) at half the normal rate yesterday because he NEEDS those calories, but his triglycerides shot way up last night even at that half-rate, so we had to take the lipids down. His white count continues to drop as does his red count, so he's been typed and cross-matched for a transfusion this afternoon. Liver is still big, spleen is still enlarged, some electrolytes are out of whack, liver enzymes are still up blood sugars ping from high to low, etc.

I'm now going to make a profound, medically complicated statement. Ready? These crazy labs either ARE the result of the infection or they are NOT the result of the infection. How is that for a moment of sparkling clarity?

Seriously, though, that is all we know right now. There is a syndrome (which I cannot pronounce much less spell) that can accompany serious infections and cause all of the above listed things (including the anemia) to happen. Mitochondrial disease progression could cause at least some of it. TPN intolerance could cause at least some.   Basically, if it all goes away and gets better, then it was the infection. If it doesn't, then we are looking at a much more complicated medical situation.

We have to take this infection very seriously. Noah can't afford a relapse. Unless some new viral study comes back positive, he will probably be on IV antibiotics for another month.   We will also probably need to run some IV fluids every afternoon when he is unhooked from his TPN each day from now on. This should help with his fluid balance and electrolytes. Doing multiple IV antibiotics is always a challenge at home, especially for this long. Everytime we run an antibiotic or premedicate with benadryl, we have to turn off the TPN. This means that it takes forever for him to get all of his TPN in, and he is pretty much hooked up to some IV or another around the clock - one day's TPN finishes just in time to start the new bag at night.

Those of you who know us outside of the hospital know that we are used to IV pumps and that we've done our best not to let Noah's medical needs slow him down. He enjoys going places and doing things, and if that means that we're hauling around coolers of drugs and switching out pumps on the go, then we do it. On the other hand, when he is running things 24/7 it DOES make a big difference. We don't let him play in our heavily wooded yard until he is unhooked each day - it is just too easy to snag a line on a branch or stump. There is a greatly increased risk of snagging a line even inside when he is on IV antibiotics- every broken line he's had has happened when he was hooked to something other than antibiotics. While he is amazingly adept at keeping up with his pump without tripping or getting tangled in his lines, sometimes he just gets tired of dragging his pump everywhere, and that frustration level skyrockets when he doesn't get a break each day.    We don't use a backpack because doing so would create a "loop" of tubing that is more prone to catching and snagging, but we may have to rig something so he isn't carrying stuff all day.

Add to that the fact that these drugs are run around the clock with one set due at 3 AM. None of this is meant by way of complaint - we are THRILLED that we have the blessing of being able to do home IV antibiotics! I just wanted to explain our concerns a bit so you would know how to pray.

To be honest, at least for a while he might not be strong enough for the pump concerns to be an issue. He is having some periods of GREAT playing and even sat propped with pillows painting earlier. He has times when he is moving around his bed or getting out of it to walk somewhere else in the room, but he fatigues VERY fast to the point that he needs help sitting or picking up toys. Again, only time will tell how much of this is a new normal and how much will go away.

Again, if you haven't read about our Prayer Warrior Wall project, please read the post from Saturday. We would love to have all of you participate!

Closing with another Noah funny: Noah doesn't do well remember to use the word "for." "Open it for me, please," becomes "Open me please." He's been playing in bed with some Little People toys (he LOVES Little People) but couldn't get one of the people into the car. He promptly started yelling, "Fix me! Fix me please!" If only he knew . . . .

***** Updated info*******

Noah had a reaction to his transfusion yesterday. His blood pressure fell from 131/85 to 80/40 within a few minutes after starting the blood. He quickly started swelling in his hands, feet, and face. He became extremely pale with lips the color of his face and developed dramatic dark circles under his eyes. His voice got very, very hoarse and croaky. It took a couple of hours to get him stable and heading back toward normal. Honestly, it was pretty scary.

We are still waiting to hear from the blood lab. They should be able to tell us more about the reaction. He could have reacted to something IN the blood (a protein, for example) which just means it will be harder to find blood that will work for Noah. He also could have reacted to the blood itself, which would be really bad.

He is still a bit pale and puny looking this morning - definitely more subdued than yesterday. Most of the swelling is down and his voice is a lot betterl. His blood sugar is still all over the map so they will be doing finger sticks throughout the day and night. :-(   We don't have his triglycerides from today yet, but the current plan is to give him verrrrryyyyy small amounts of lipids every other day while we watch things closely. If he doesn't get the lipids, he won't get any essential fatty acids or fat soluble vitamins. If this doesn't clear up fast, it will be a real trick to keep his triglycerides at a safe level while getting him enough fats at the same time.   Little Enigma Boy was characterized this morning as "completely out of whack - and we don't know why." At least he isn't boring . . . . :-)

Blessings,
Kate

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May. 10, 2009

The plot thickens

Posted in Noah Updates

We've had some more bad news this morning. I suppose I shouldn't have been surprised, since this infection has been SO different in so many ways. Noah's triglycerides have always been very, very low. Normal is 100-ish and his are always well below that. This morning his night nurse told me that they did not hang his lipids (the fat portion of his TPN last) last night because yesterday's triglycerides were well over 400! No one got too alarmed, figuring that this HAD to be a lab error. They went ahead and stopped the lipids just to be extremely careful, but no one thought for a minute that those triglyceride levels could possibly be accurate.

Well, this morning, after going without lipids all night, Noah's triglycerides were still almost 300. This usually signals TPN intolerance and is often the first sign of a serious infection - but Noah's CRP (infection marker) was down even lower this morning! None of this makes sense. The doctor said that Noah's enlarged liver might be more serious than we thought and that the triglycerides could be a liver issue.

Noah's white count is still suppressed and very low. Again, not good, and something we would expect to see improving alone with everything else.

The doctor said that almost everything points to an infection that is being suppressed but not cured. The dropping CPR doesn't fit with the picture of a suppressed infection, but everything else does.

Noah once again has everyone baffled. He seems a little perkier at times, and hasn't had anything more than very low grade fevers for a day and a half+. . . but in so many ways he isn't actually getting **better**.

The doctor said that we need to focus on the positives right now (the CRP and temperature) while we work on figuring out what on earth is going on everywhere else. We haven't done a thing to figure out his dropping blood sugars - right now, if he is off TPN in order to run other drugs, we have to run dextrose (sugar) solution. At some point we will have to see if he can hold his own without the dextrose or TPN running. We'll also need to transfuse at some point when he is doing better.

To be honest, I thought we were on cruise control yesterday - once Noah starts getting better, he usually improves very rapidly. We've never had so many other weird things happening.

Because we still don't know WHY Noah is doing better, everyone is still being very conservative in terms of infection management. In addition to figuring out the "other stuff," he will need to be on these antibiotics until all of his infection labs are perfect, then for an as-yet-unspecified time to be sure they stay perfect. He will then need to be observed for some time after the antibiotics have stopped to be SURE that whatever this is doesn't come back. The last thing he needs is a relapse.

I think everyone is a bit frustrated by the complexity of Noah's current situation. The doctor this morning said, "Well, some things do look better, but the rest . . . well . . . ." and just stood shaking his head. The idea of liver trouble starting is like having a nightmare come true.

In all this, we take GREAT comfort in knowing that the Great Physician isn't suprised by these turns of events. The One who knit Noah together knows exactly what is happening and why. He knows what will happen, and He's promised to never leave us through it all. Thank you all again and again for your prayers and encouragement. If you didn't read about our Prayer Warrior Wall project in yesterday's post, please go back and read yesterday's post -we would love for each one of you to participate along with anyone else who prays for Noah! If you share about Noah in any way (your blog, your church, etc.) please let those folks know about our project. You are welcome to cut and paste the appropriate portion of yesterday's post as needed.

Two smiley thoughts (I think we need them!): First, Finding Nemo has become the soundtrack of my life. Noah wants it to play ALL of the time, and will crack open an eye while he is sleeping to be sure that it is still playing. The nurses' computers are identified by Nemo characters and he takes GREAT stock in seeing which computer comes into his room each time. They have to scan his bracelet with a handheld scanner (like in stores) each time he gets meds. He has learned to use the scanner and spends several minutes scanning everything in his bed each time he gets the chance. Second, our "old" dog Edison has come home to use from foster care. Noah talks about him every day, but since Thomas Edison isn't part of Noah's frame of reference, he calls the dog . . . . Medicine. :-) Makes more sense to him, I guess!

Blessings,
Kate

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May. 9, 2009

On the right track!

Posted in Noah Updates

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

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

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

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

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

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

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

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

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

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

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

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

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

Blessings,
Kate

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May. 8, 2009