Tuesday, July 31, 2012


Please click the link below to enter the amazing Village of Hope--Guatemala giveaway.

Hurry, cuz today is the last day to get in on the fun with an eternal purpose.

Don't forget to click the link below to learn how easy it is to enter and be eligible to win some really awesome prizes that benefits a really awesome ministry.


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Monday, July 30, 2012

The Scoop on Selah’s Skull Lumps

Selah saw her reconstructive surgeon, Dr. Harshbarger, today regarding the fluid-filled lumps all over her skull.  He said this can happen post-surgery, usually 9-15 months post-op.  Selah is 11 months post-op.  Our biggest concern was the largest lump that was red with a white center, which appeared to be infected.


Dr. Harshbarger wants to watch it to see if the infected mass gets better on its own without antibiotics and/or lancing it.  He wants to see Selah next week to inspect again.


Dr. Harshbarger explained that Selah is having an exuberant inflammatory response to the biodegradable plates and screws in her skull that might take up to 3 months to resolve/disappear/lessen.  Her skull is literally covered in fluid-filled lumps that are about the size of a penny, but only one of these is infected.


Selah’s lymph nodes behind her ears/in her neck are massive, about the size of a small egg, which indicate her body’s inflammatory response.  The body apparently thinks there’s infection at the site of the various plates and screws, so it’s sending white blood cells there to fight “infection”, resulting in these pus pockets all over Selah’s head. 


Luckily, Selah’s crazy curly “fro” conceals the majority of the lumps, except for the one that is infected.


And, as you can see from the blurry photos, the girl won’t sit still for anything!!!  In fact, the nurse who was trying to take photos of Selah’s skull gave up after 15 minutes of trying, and this was with Selah contained in a Bumbo seat that was suspended in the air on a tall stool.


Which brings me to another prayer request for Selah.  Her brain is literally always on overdrive.  She must move at all times, more than even “typical” hyperactivity.  All of the doctors and specialists who see her say they’ve never seen a child like her, which is coupled with the fact that they’ve never dealt with a case like Selah’s miracle story.  No one knows what to expect with her because they don’t have data on a situation like hers since she shouldn’t have survived birth and was expected to be stillborn.  So, Selah’s neurological issues are novel for all involved with her case.


What we know is that Selah’s brain isn’t able to self-regulate and calm down, even with physical and occupational therapies that would help a typical brain to regulate.  She is off-the-charts-always-in-overdrive mode at all times, including sleep times.  I have to say that while we marvel and rejoice in the miracle of Selah, we all need some down time.  The longest Selah has ever sat still is 8 seconds.  Literally.  5-point harnesses are her enemy, like a straight-jacket to her spirit.  It’s horrible.  Selah MUST move, as in physically move AT. ALL. TIMES.  She doesn’t quietly play with toys or dolls or look at books or watch movies or anything.  She is constantly moving and climbing.  She won’t stay in our arms either.  If she sees something she could possibly climb, she must do so.  Like, for instance, climbing the cabinets using the cabinet pulls like it’s a rock climbing wall.  Climbing into a chair, not to sit, but to climb to the back of the chair like it’s a step to the next highest place.  It’s never-ending excitement with Selah without an iota of down time or “off” time.


Selah’s neurologist can’t see her until November 13.  She will have her sleep study August 28.  In the meantime, everyone is stumped at how to help Selah’s brain regulate.  We’ve found Daddy’s tractor is the only thing that helps her, which involves the loud diesel motor and lots of jiggling.  We try to emulate this in other ways, but it never works.  So, tractor time it is when we all need a break. :-) 


We praise God that there are many hands on this team to help supervise Selah.  I know none of us could do it alone.  Even with sheer exhaustion, we always ALL agree that Selah is one of the greatest blessings on earth.  Thank you, Jesus, for sending this little miracle girl to us.  We are always grateful, even when we’re exhausted.

Selah’s Skull Lumps



Selah spent Saturday at the ER because she developed these fluid-filled pockets all over her skull and had HUMONGOUS lymph nodes below her ears (both sides) in her neck.  One of the lumps appeared to be infected/abscessed.  We weren’t sure if her VP shunt was failing and cerebral fluid was leaking through cracks in her skull to form fluid-filled pockets outside her skull.


The ER doctor said the one lump that is all red with white in the center was definitely infected, resembling an abscess.  He wanted to insert a needle into it, draw pus out for cultures, and aggressively treat with IV antibiotics to avoid a brain infection.  ER doc contacted Selah’s neurosurgeon to consult with him.  Neurosurgeon (Dr. George) ordered CT scan of head.  Selah was not a happy camper patient.


Dr. George reviewed the CT scan via his computer from home.  He said it looked as though Selah was reacting to the chemical resorption of the plates/screws/hardware in her skull from her skull reconstruction almost a year ago.  He didn’t want to treat the infected lump in the manner the ER doctor suggested because Dr. George felt that opening the lump would put Selah at greater risk for further infection from bacteria that could invade if it were opened.  Dr. George requested Selah be seen in his office Monday morning for further review.


I talked to the neurosurgery office this morning, and they explained that Dr. George is on vacation until August 6.  UGH!  What?!?!  A covering neurosurgeon (who happens to be the person we said we’d never see again after he disappointed us with a negative, opinionated comment about Selah’s worth or lack of it back when she was an infant) would see her tomorrow in Dr. George’s absence.


Momma wasn’t very happy with this.  My wise husband suggested I contact Selah’s reconstructive surgeon (Dr. Harshbarger) since this appears to be a result of the plates/screws he installed.  I talked to Dr. Harshbarger’s nurse, who said this can occur.  Apparently the body sends white blood cells to fight what the body believes is infection at the resorption sites as the biodegradable hardware decomposes.  So, these are pus-filled “blisters” all over Selah’s skull, but there’s still the issue of the infected one.


So, Dr. Harshbarger will see Selah at 11:30AM today to observe the infection and determine how he wants to treat it.  We appreciate your prayers!

Friday, July 27, 2012

R&R and IRS

We had a wonderfully refreshing time on our little getaway this week.  The R&R was fabulous, but now it’s back to real life.  Sawyer has his second Remicade infusion treatment today for his Crohn’s disease.  He’s been feeling fantastic since he started steroids (early July) to help control his severe Crohn’s flare-up.  He’s still weaning from the steroids (he’s at 10mg/day) now, so it’s hard to know if the Remicade is working yet, but Sawyer says he feels better than he’s felt in many months.  We’ve never seen Sawyer have this huge of an appetite, so it’s great to see him WANT food!  Every single day of Sawyer’s life (until steroids) has been a battle for us to get enough calories and nutrition into his body because he’s never wanted to eat.  What a delight to see Sawyer eating ravenously, as his body has always needed more calories.  What Satan intends for evil, God uses for good.  We praise Him for His provision and for carrying Sawyer through this storm.  He is faithful and will use this trial in ways we least expect.


Speaking of trials, would you please pray for a situation with the IRS that is frustrating us to no end?!?!  If you’re an adoptive family within the past 5 years, you probably got audited for your adoption credit(s).  We did.  The IRS is STILL not accepting Chrissie’s adoption.  Y’all, this is a child who is dead now (although she eternally dances with Jesus).  Every single time we get a letter from the IRS regarding Chrissie’s adoption, it’s like stabbing a knife into our hearts.  I simply cannot believe the IRS continues to fight this!!!!!!!  The problem originated because Chrissie never got a social security number.  We applied for that before Chrissie’s surgery, but the person at our local Social Security Administration office never followed through.  We got the original SS# application back a few months ago so that we could prove to the IRS that we did INDEED apply for a SS#, but now the IRS is stating that Chrissie’s adoption was not a special needs adoption.  WHAT?!?!?!?!  We had already sent them all of the receipts to prove what we spent on her adoption, plus with a special needs adoption, one doesn’t even need to prove expenses to the IRS.  How in the world with the receipts AND proof of special needs could the IRS disallow Chrissie’s adoption credit?!?!?!  Every single time we send in what they ask for, they reply with a new request for different info, always disallowing the credit.  It’s not rocket science, y’all.  This isn’t even a refund.  It’s a credit applied to our taxes from 2009.  Now the IRS is saying we owe over $18,000 due to penalties and extra interest on top of Chrissie’s adoption credit that they disallowed.  We’ve sent all required documentation, including Chrissie’s adoption decree, birth certificate, death certificate, proof of special needs adoption, receipts, as well as a variety of other miscellaneous documents related to Chrissie’s adoption.


When we arrived home from vacation, there was yet another denial/disallowance letter from the IRS.  This literally just makes us sick.  We do NOT want to keep hashing this out, and we are NOT paying $18,000 when we legitimately adopted Chrissie and have everything to prove it.  We’ve even contacted a tax advocate, who recommended we send in the last set of newly requested info (to the IRS), as that is all that they would do for us anyway.  I will contact an advocate again and see if we can get someone to help us with this.  Every time I call the phone number listed on the IRS letter(s), I cannot get accurate info.  We haven’t ever been able to speak to our tax examiner, only a random IRS representative who never has a clue what’s going on with this.  They just tell us to send in all of the info we’ve already sent.  So, we send it in, then wait 2-3 months to hear back from the IRS, and each time, the IRS has disallowed the adoption credit and then charges more interest since the interest accumulates from the day the taxes were originally filed.  We are always given 15 days to respond, yet the IRS can take as long as they want to respond.  Their letters always say, “We apologize for our delay in responding and any inconvenience it may have caused you.  The information submitted has been carefully considered and the following shows our determination:  We are disallowing the adoption credit.”


This time the letter says, “For Christyn, there is no special need in a foreign adoption.”  We were told that special need adoptions can be international or domestic.  Has anyone else encountered this problem?!?!?!  Has anyone else filed a special needs foreign adoption and received the adoption credit? 


Oh, and in addition to calling the IRS phone # listed on the letter(s), we’ve also requested our examiner return our phone call, but no one ever has.


Enough is enough, so I’m calling in the troops—the army of prayer warriors.  Would you please pray that the IRS would see that we’re not claiming some type of fraudulent adoption?!?!  Chrissie was a real, live child whom we adored, who now lives with Jesus.  Pray that the IRS would have their eyes opened to the truth of Chrissie’s adoption and give us the adoption credit from 2009 that we deserve!!!  Thank you!

Tuesday, July 24, 2012

Sand and Sun

We're grateful to be spending this week at Hyatt Lost Pines for family vacation. Thank you, Jesus. :-)

Monday, July 23, 2012

My Heart is Burdened

My heart is so burdened for Village of Hope--Guatemala.  I don't know why I feel as strongly as I do, but the why really doesn't matter.  It's the what am I going to do about it that matters.  My precious friend, Amy Block, and her family are missionaries who are in the process of starting this brand new mission in Guatemala.  They're trying to build a village that will house special needs orphans, providing faith, family, and future to the least of these.

Please read the post below (written by Amy Block) and prayerfully consider donating to help Village of Hope meet the needs of so many hurting, helpless, and hopeless people in Guatemala.  They need our support more than words can accurately portray.  Oh how I wish I could make everything all better for everyone, but for now, I'll settle for making a difference however God will allow, even if that means just giving $10.  That $10 will help bring HOPE to one person in Guatemala who wouldn't have hope without that donation.  I can do that.  I pray you will, too.

PS  I'm planning to take two of our children on a mission trip to Guatemala in August to serve at Village of Hope.  I can't stand forking money over to airline tickets when that money could be going to the village.  If you have any free tickets/airline miles you'd like to donate to our trip, please let me know.  We would be most grateful.

Now, here's the post by Amy that I'd love for y'all to read and donate to Village of Hope so they can do more for families like the one you're going to read about below:

Written by Amy Block 

I am a list maker. I learned that from my mama.

To me, being able to cross things off my ‘to do’ list, to grab my pen and scratch through a job as ‘finished’ signifies accomplishment.

Yet, ever since moving to Guatemala I have noticed that the Lord has been teaching me a different way. Since living here I rarely have the opportunity to cross things off. Actually, rarely do I even have time to make a list. And while I fully admit that can sometimes be overwhelming, what I have learned is that I need to allow the Lord the freedom to direct how I spend my days.

The Lord directs our steps, so why try to understand everything along the way? Proverbs 20:24

And so each morning, without fail, I get on my knees and ask God to show me what He has for me to that day... and that list in my head changes drastically.

A few days back God brought this precious family into our lives and they helped me see my to do list in a new light.

Aura Marina and her seven children live in a little village called Chi Tuk not far from Village of Hope. The main thing on Aura Marina's 'to do' list every day- is to simply survive.

As we visited with Aura Marina and her children, asked about their needs, prayed for them and got to know them better -for whatever reason the Lord brought my ‘list’ to mind. He reminded me that the bathrooms I complained about cleaning were a blessing…

                                                                   (family bathroom)

That the dinner ideas I had so often whined about trying to come up with were a blessing…

                                           (Aura Marina and her only means of cooking for her 7 kids)

And that the leaky roof we had been experiencing really wasn’t that big of a deal after all…

                                  (one bedroom, dirt floor home Aura Marina and her 7 kids live in)

And what I couldn’t help but wonder was how many times in the past I had allowed satan to distract me, to fill my head and my heart with my own shallow complaints, my own selfish wants, and my own agenda- that in the long run really don’t even matter. How much time had I wasted focusing on my own little world… when the world around me was crying out for Him?

So today I challenge you to ask God to arrange your 'to do' list for the day. I challenge you to not get so caught up in your own kingdom- that you forget about His.

If you would like to partner with us here at Village of Hope in helping families like Aura Marinas you can visit us at: Lifesong for Orphans- Guatemala.

Friday, July 20, 2012


Cooper’s physical therapist recommended the boys start riding in Power Wheels vehicles in order to help their bodies get adjusted to moving through space, something we take for granted.

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Since Cooper and Conner never left their cribs for the first six years of their lives, sadly, they never got to experience their bodies moving through space.  This motion is essential to development.

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We had an old Power Wheels vehicle that “died” last year when Vlad and Dima were here.  (Vlad and Dima LOVED the Power Wheels Gator and drove it to death, literally.)

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But with some TLC and several hours of fiddlin’ with things, Daddy was able to resurrect the Gator!  Conner loves the movement.  Cooper?  Not so much.  We’ve found with Cooper that it takes him about 10 times/tries until he finally calms down and accepts whatever the new experience is.  During the first 10 times, Cooper is loud and verbally communicates his disapproval and mistrust by fussing loudly.  After Cooper realizes it’s OK (usually after doing the same activity for about 10 times), he will quiet and calm down, and sometimes he’ll decide he actually likes the activity.


Here’s a video of Kiefer driving the boys around in the Gator:


So grateful for this provision and experience for the boys! I’m told this movement will help them want to walk, and someone said even their ability to communicate is affected by this type of movement. Glory to God for the boys’ continued progress.


PS  Please click HERE and read this heart wrenching, yet heart warming, story.  The heart warming part is made possible because of giving and caring people like you!!!!  Thank you for supporting Village of Hope—Guatemala.  Remember, there’s a SWEET GIVEAWAY benefitting Village of Hope, but hurry, it only runs until August 1!

Thursday, July 19, 2012

The Miracle of Nathan


Yesterday we had the privilege of meeting Carrie Eubanks and her son, Nathan.  Unfortunately, this meeting occurred at Dell Children’s Hospital instead of in our homes.


On July 10, Nathan drowned.  He was miraculously resuscitated, admitted to PICU at Dell, and was put under a medically induced coma in order to protect his brain.


On July 18, just a week after the drowning, Nathan was sitting up in his hospital bed, watching TV, without any oxygen or extra hospital equipment.  His brain MRI shows no trauma, and Nathan’s a living miracle for God’s glory.


Nathan is 6-years-old and has Down syndrome.  He’s a biological son with 4 other siblings.  He has two sisters who are adopted from Ukraine and also have Down syndrome.


As I sat in Nathan’s hospital room, it didn’t even occur to me that our two boys, Conner and Cooper, are actually older than Nathan.  Nathan is so much bigger than Conner and Cooper combined!  He’s a precious, precious, precious boy who is seriously adored and totally treasured by his family, and it shows.  He’s such a smart and healthy guy, a great inspiration to us all.


Would you please pray that Nathan would be completely healed and be able to go home soon?  Pray that there will be no signs of this even ever happening—no trauma anywhere in his body, with all abilities restored fully, for God’s glory.  Nathan is living proof that God still performs miracles.  What a blessing to stand in the same room as this treasured miracle, to pray over him while he played with my bracelet, and to hug his awesome momma’s neck and swap stories.  So grateful for all He has done and continues to do in this miraculous testimony of Nathan.  Thank you all for praying!

Wednesday, July 18, 2012


I heard a ruckus coming from Conner’s and Cooper’s bedroom, followed by laughter.  The boys had been put to bed about 30 minutes prior.  I went in to check on them only to discover this as I turned on the light:

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Remember, the boys sleep in cribs, as this is what they did in Ukraine, so imagine my surprise to find Conner out and about when I turned on the light.  He was actually sitting in the rocking chair when I first turned on the light, then he quickly scooted to the floor to show me all of the things he’d pulled down and knocked over and the things he’d strewn about.  He even opened drawers and tossed all of the clothing out! 

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I knew the time would arrive when Conner (and I’m assuming eventually Cooper as wel) would crawl out of his crib. Conner is rapidly gaining physical skills he’s never had. He’s exploring, climbing, crawling, cruising, and continuously into everything. It’s hard to keep him contained, as he’s a little Houdini who can get out of just about everything.  He’s come so far in four months, so I guess I should celebrate this milestone, right?

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Oh. My. Word.

photo 4

Conner was on a mission to throw everything he could get his hands on while Cooper laughed hysterically, cheering him on like any good brother would do!

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Just look at that face!  I want to celebrate this milestone, I really do, but this boy is NOT safe roaming around in the night. He cannot be trusted to stay in a regular bed…gosh, he’d NEVER EVER stay there, so back in the crib he must go.

photo 1

I had been looking for a crib tent just this week, but I haven’t been able to find one anywhere.  I was told one model was recalled, so I’m assuming all crib tents are no longer for sale.  We never had to use a crib tent with any of our other kids, so I don’t have any in storage either.  (BTW, if anyone knows where I can get a crib tent, I’d love to know!)  As Mattie and I pondered how in the world we would keep Conner safe in the night, Mattie had the fabulous idea to put one of the PeaPods we used in Ukraine into Conner’s crib.

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Conner wasn’t so happy about being confined, after all, shenanigans have way more fun!  But safety is top priority, whether Conner agrees with me or not.  Praying this keeps Conner safe until we find another solution.  Praising God for the blessing of redemption—Conner is living proof!  Little shenanigan!


And we mustn’t forget the other little shenanigan who is Conner’s partner in crime.  While Cooper is confined to his crib for a while, due to his bar shoes/braces, that won’t stop him from enjoying the view from his crib while he watches his brother get into mischief.  Hope you enjoy this video of Cooper cracking up at his brother, Conner:


Tuesday, July 17, 2012

Such a Sweet Moment

One of the things I’ve prayed and hoped for is that all of our children, including those who joined our family after Chrissie was already in heaven, would know about their sister Chrissie.  We have photos of Chrissie around our home, and we speak of her often.  But because our newest kiddos cannot meet or talk to their sister, Chrissie (since she lives in heaven), I’ve often wondered how our little ones will wrap their brains around this sister they have never met, cannot talk to, and cannot see.


Last night during bedtime snack, Selah started saying, “Chrissie…where?”  She kept looking at our countertop and repeating herself.  None of us have ever heard her say Chrissie’s name, so this really took us by surprise.  We weren’t quite sure why she was saying this while she was looking at the countertop.  It was as if she was looking for Chrissie and asking us where she was. 


We finally figured out that there was a box of diapers sitting on the countertop that was blocking a framed picture of Chrissie.  Selah noticed this, so she was asking us where that picture of Chrissie was!  Once we realized what Selah was saying/asking, I decided to video her since this was her first time to acknowledge Chrissie.  I’m sure Selah doesn’t realize Chrissie is her sister in heaven, but hearing Selah say “Chrissie” while looking for her photo was deeply touching.  We praise God for the legacy of love Chrissie has left behind, and we pray all of our children will know this about their sweet sister in heaven.

Video of Selah saying, “Chrissie”. LOVE it!

Monday, July 16, 2012

Paperwork Help Needed/Wanted

Back when Chrissie went to heaven on May 19, 2010, several people contacted me with the idea that we form Boss Your Heart Orphan Ministries as a non-profit 501(c)3 in memory of Chrissie.  Boss Your Heart Orphan Ministries would help orphans around the world in memory of Chrissie.


God confirmed that we should form this ministry with the purpose of helping orphans around the world, in memory of Chrissie; however, we haven’t completed the required paperwork to make Boss Your Heart Orphan Ministries an official non-profit organization.  Part of adoption is paperwork (which I loathe).  The paperwork doesn’t end once the child comes home either, so I always seem to be drowning in paperwork.


If there’s anyone out there who feels led to help with the 501(c)3 paperwork to make Boss Your Heart Orphan Ministries a non-profit organization, please let me know.  If you have experience with 501(c)3 paperwork, that would be fantastic.  I would LOVE to get this official non-profit status so that donations can be tax-deductible.  Please email me at BossYourHeart (at) gmail (dot) com if you’d like to help.  Thanks so much!

Saturday, July 14, 2012

Sawyer’s Diagnosis and Treatments

I’ve had a few of you ask about the details of Sawyer’s Remicade infusion treatments and his diagnoses, so I thought I’d share a little more info.  On July 2, during a visit to the ER due to severe pain, Sawyer was  diagnosed with Crohn’s disease, a life-long condition that affects the entire gastrointestinal tract.  Sawyer stayed at Dell Children’s Hospital for six days while a variety of specialists (gastroenterologist, infectious disease, hospital pediatrician, etc.) worked on his case.  During his hospital stay, Sawyer endured many tests, including a colonoscopy, endoscopy, upper and lower GI, abdominal CT scans, X-rays, and much blood work.  It was determined that Sawyer had such a severe case of Crohn’s that the specialists felt he would need to jump to the big guns of Crohn’s treatment (Remicade medicine) in order to control things.  The other drugs would take too long to work and most likely wouldn’t be powerful enough to effectively control Sawyer’s Crohn’s disease.  Since my hubby/Sawyer’s daddy takes Remicade to control his ulcerative colitis (because all other meds failed), it was likely that this medicine would be effective for Sawyer as well.


On July 13, after proving that Sawyer and none of our family members have active TB, Sawyer was able to receive his infusion treatment in a special infusion room at his gastroenterologist’s office, which is adjacent to Dell Children’s Hospital.  (Patients who receive Remicade and have TB are not able to fight it off, resulting in death most of the time, which is why we had to prove that no one has TB in our family.)  I took Sawyer for his first infusion treatment and shortly after our arrival, we were taken to the infusion room where we visited with the infusion nurse.  She explained everything to Sawyer, got his IV started, then got him set up in a comfy reclining chair.  The best thing about this room and procedure is that there’s an X-box video gaming system that Sawyer LOVED.  Since we don’t have video games/TV in our home, Sawyer was thrilled that he would get to play video games while he got his infusion, which was an excellent way to pass the time for him.  It only took about 3 hours total for the infusion (about 4 hours for the visit, set-up, discharge, etc.), so that was a pleasant surprise since we had prepared for 5-8 hours for his first infusion.  The first infusion must be done more slowly than subsequent infusions because they have to watch closely for adverse reactions.  Sawyer displayed no signs of adverse reactions, so the nurse was able to bump up the speed of the infusion more quickly than we expected.

photo 1

Sawyer is such a trooper.  The infusion nurse commented that he was an excellent patient.  He’s seriously so very brave, such a warrior.  Nothing bothers him and nothing is going to steal his joy.  He finds delight in the little things that most of us take for granted.  He doesn’t flinch or squawk about the IV or the meds or the procedure or his condition.  The nurse pulled me aside to let me know what an awesome kid Sawyer is, after being around him for only an hour or so.  I absolutely agreed. 

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We’ve really missed the “real” Sawyer who has slowly disappeared over the last few months.  None of us, including Sawyer, realized how sick he really was.  The severity of Sawyer’s illness was not revealed until the day I took him to the ER.  We had a couple of doctor’s visits prior to the ER visit (a well check and a visit specifically for his pain), but no one realized just how sick and how serious things were.  In hindsight, we realize that the Crohn’s Disease had caused Sawyer to be extremely lethargic and just not himself for the past few months.  I recently commented, before Sawyer’s hospitalization, that Sawyer seemed depressed because he had stopped joking, laughing, being silly, and being a source of constant amusement in our home.  He was just so sick internally that he could barely function, but none of us realized what was going on.  While none of us want Sawyer to have Crohn’s, the diagnosis explains everything about Sawyer’s recent symptoms and behaviors, right down to personality changes. 


We also wonder if Sawyer has had Crohn’s most of his life, but just hadn’t had a flare-up of this magnitude.  As an infant, Sawyer was diagnosed with allergic colitis.  He had severe inflammation in his colon, and he had bloody diarrhea caused by food allergies.  I breastfed Sawyer until he was 20 months old, but I had to completely avoid any and all forms of the multiple foods/ingredients he was allergic to.  Corn/corn products was a huge allergen for Sawyer, and I was shocked to find out that there were over 100 forms of corn/ingredients derived from corn that didn’t even have the word “corn” in them.  Things like dextrose and maltodextrin, both derived from corn.  Even things like my licking an envelope seal (which has corn in it) would cause Sawyer to have bloody diarrhea as an infant after I breastfed him.  Yes, it was that severe. 


Sawyer has suffered from malabsorption his entire life, he’s suffered from severe food allergies his entire life, he was failure to thrive as an infant, he wasn’t even on the growth charts until age 18 months, then he remained in the less than 5th percentile on the growth charts up until this year, when he jumped up to the 25th percentile for his height, which we rejoiced in.  The symptoms of Crohn’s match up to most of what Sawyer has experienced for his 12 years of life, so it’s possible that Sawyer’s had Crohn’s for a lot longer than we realize.  This recent flare up was so severe that Sawyer just couldn’t function, which is why I took him to the ER.  This diagnosis seems to explain a lot about Sawyer’s history.  We pray Sawyer’s future will soar now that we have a diagnosis and treatment plan.  Although Sawyer will always have Crohn’s, unless Jehovah Rapha heals him, there is treatment to control the severity of the disease.


Sawyer will get another IV infusion of Remicade in two weeks, then he will move to every four weeks.  The goal is to get to every eight weeks, or further between intervals, but we won’t know the exact schedule and requirements until we see how Sawyer’s body reacts to the Remicade.  We will continue to pray for supernatural healing, along with the Remicade, with hope and belief that one day Sawyer will be in remission.


We want to thank you all for praying for Sawyer.  Your prayers are genuinely felt and greatly appreciated.  We also want to thank everyone who stepped in to serve meals to our family during Sawyer’s hospital stay.  The body of Christ is incredible.  Without even asking for an ounce of help, people show up at our house to bless our socks off.  Seriously, we cannot thank you all enough for being His hands and feet through prayers and meals and helps in a variety of ways.  So grateful for each of you.  Thank you is not enough.

Friday, July 13, 2012

Sawyer’s On For Today!

Conner’s chest X-ray was clear, meaning he doesn’t have active TB.  Hallelujah!  This means Sawyer will get his first Remicade infusion treatment today at 11AM.  Please be praying for Sawyer not to have any negative reactions to the medicine, and, of course, that it would be effective in controlling his Crohn’s disease.  Since my husband also takes Remicade (for his ulcerative colitis), the gastroenterologist is betting that Sawyer will react well to the Remicade, too, since their genes are the same.  This would be wonderful.  Sawyer’s infusion is expected to take 5-8 hours, so hopefully he’ll be occupied easily with a good book. :-)


Sawyer is currently taking 20mg Prednisone to control the Crohn’s.  This was an emergency quick fix since Sawyer couldn’t begin Remicade until we proved that no one in our family had active TB.  Sawyer will have to slowly wean off the Prednisone over time, so please be praying for this weaning to go well, too, as it can be challenging to get completely off Prednisone after taking high dosages.


Thank you all for praying for Sawyer.  We’re still praying Jesus will heal him completely!!!

Thursday, July 12, 2012

And the Answer Is… (plus some videos, too)

We got our Tb tests read late Wednesday afternoon.  (Thank you to all who prayed and checked in on us during my absence from the blog.)  Unfortunately, Conner tested postive for Tb, so we will go for a chest X-ray today to determine if he has active Tb.  He will also get his blood drawn to send off the special test (gold test) to determine if he could have latent Tb or if it was just a false positive.  Conner doesn’t have symptoms of Tb, and he had a chest X-ray during his hospital stay that didn’t indicate active Tb, so I’m not too concerned about it.  We do, however, need to be absolutely sure that Conner doesn’t have active Tb, as that could be life-threatening for Sawyer once he’s on Remicade.


None of this is a surprise to our Father, as He even knows the number of hairs on our heads.  Nothing gets by Him, and He loves Sawyer even  more than I do, so I have faith that He’s got a good plan in all of this.


And now, while we wait for X-rays and results, enjoy two videos of Cooper and Conner. BIG progress happening around here, folks!!!  God never ceases to amaze me.  Just a couple of weeks ago, Cooper was convinced his legs didn’t work *at all*.  He’s now pulling up, cruising, climbing—amazing difference in just a week or so!!!  Praise the One who has made this possible for Cooper!!!




And Conner is eating from a spoon!!!!!  I had pretty much given up on Conner ever eating anything from a spoon because  he was so defensive to anything near his mouth.  I continued to try pureed foods from a spoon for Conner, with hopes that one day he’d change his mind and decide the food was yummy.  Well, the day has come, friends!!!  Conner is eating yogurt from a spoon.  Huge accomplishment!!!  God is good!!!

Monday, July 9, 2012

Tb or Not Tb? That is the Question

Thank you all for praying for Sawyer and for continuing to ask about him.  He’s home and doing well.  The steroids have made a tremendous difference in helping to manage the severe inflammation inside his GI tract, and the high-powered antibiotics appear to be relieving the secondary infection that appeared with the Crohn’s disease.


I would love for you all to join me in praying for an accurate diagnosis with regards to Tb.  Persons can have latent Tb where they are not contagious and do not have symptoms of Tb.  The problem with Tb and/or latent Tb with Remicade is that if a person has either form of Tb and begins Remicade treatments, they basically die or spend many months fighting for their lives.  Remicade apparently knocks out the body’s ability to fight off Tb, so they’re finding that one of the major risks of Remicade is death due to Tb. 


The other thing that has been discovered is that when a person has an autoimmune disease, their bodies don’t always react to the Tb test, so even if they had active Tb, they might get a negative reading on a Tb test.  Since Sawyer didn’t react to the control injection, his Tb test is basically not valid.


So the hospital did a chest X-ray to look for any signs of active Tb, and Sawyer’s chest X-ray looked “pristine” (doctor’s words).  That was good news, of course, but there’s still a very remote possibility that Sawyer could have latent Tb.  They consider Sawyer’s exposure to be higher risk because he’s traveled outside the US several times, plus he has a sibling with latent Tb.  Even though latent Tb is not contagious, there’s always a chance that a person’s latent Tb could turn into active Tb and then be contagious.  (Kind of like chicken pox.)   If a person with latent Tb gets Remicade, the result is often death.  Not good.


Sawyer’s blood was sent out to test for latent Tb.  We know he doesn’t have active Tb, but everything that can be done must be done to prove Sawyer doesn’t have latent Tb either.  The latent Tb blood test takes about a week to complete because the lab must watch the cells in the blood for a specific period of time in order to determine if there’s a possibility of latent Tb in the blood.  However, we’ve also been told that even if Sawyer’s blood test comes back negative for latent Tb, there’s still a chance he could have it because the reading can be a false negative or inconclusive due to Sawyer’s autoimmune disease.


So, in an effort to help determine that Sawyer doesn’t have active or latent Tb, the infectious disease docs asked me to have everyone in our family Tb tested.  We will all go this morning to have our Tb tests, and those will be read 48 hours after the injection.  Sawyer cannot get his Remicade infusion treatment until we all prove that none of us has active Tb that could have gotten transferred to Sawyer.


We would be most grateful for your prayers that all tests will be accurate, that Sawyer will not have latent Tb, and that he will be able to begin his Remicade infusion treatments this week so that his severe Crohn’s flare up can begin to clear up.  Feel free to pray that Jesus would completely heal him of this disease while you’re at it. :-)  Thank you!

Saturday, July 7, 2012

Sawyer is home!

Just a quick note to let y'all know that Buckshot's back!!! He was discharged from the hospital around Noon, sporting his Crocs with hospital socks--and proud of 'em! We're so grateful to be back together as a family again under one roof! Thank you, Jesus!!!

Friday, July 6, 2012

Sawyer's not going home today :-(

Just a quick note to let y'all know that Sawyer's blood pressure and heart rate have been low the past 12-18 hours, so they're not discharging Sawyer today.

They did an abdominal X-ray today to check for perforations because several people involved in Sawyer's care were concerned about that, but, praise God, the X-ray showed no signs of perforation. He does, however, still have most of the barium in his GI tract from his Upper GI testing Wednesday. Super slow motility. Still waiting to talk to GI doc today, so I don't have any answers on that issue (and a few other GI issues we still need to discuss).

Doc is thinking the oral pain meds (which were just added yesterday) were the cause of low BP and heart rate, so dosage and frequency are being lowered. It will probably take until tomorrow to know if everything stabilizes and pain is managed adequately in order for Sawyer to comfortably go home while he waits for the negative Tb confirmation so he can start Remicade infusion treatments.

Sawyer's spirit is always encouraging. Such a strong and brave warrior.

Sent from Lorraine's iPhone

Thursday, July 5, 2012

Update on Sawyer

Well, it’s complicated. :-)  We’ve been meeting with a variety of specialists today regarding Sawyer’s case.  Thanks for your patience in waiting for an update, and thanks for praying regardless of hearing from me or not.  So grateful for all of you!!!


The upper GI test confirmed Crohn’s disease has attacked Sawyer’s upper gut, but there aren’t any strictures that require surgery, praise God.  Sawyer has severe inflammation in his stomach and small intestine, which explains why his stomach always hurts.  Since Sawyer was an infant, he’s always had stomach pain.  He was diagnosed with allergic colitis as an infant, and he’s just always struggled with stomach pain.  Sawyer has severe food allergies, so we always assumed his gut was just ultra sensitive.  It might just be that Sawyer’s been battling Crohn’s for longer than we realize. 


We still don’t know how much of Sawyer’s lower intestinal tract is affected by Crohn’s, but there’s not a good way to determine that since the colonoscopy revealed such severe colitis that it was too dangerous to explore further with the scope.  Sawyer’s gastroenterologist visited with us today regarding this, and basically, Sawyer’s Crohn’s case is so severe (as verified in just the sigmoid colon) that it warrants jumping straight to Remicade as the solution.  Remicade works quickly (when it works), and Sawyer is in desperate need of quick healing.  He’s a very, very sick guy.


Sawyer has ZERO appetite.  He doesn’t want to eat anything or drink anything, which goes with Crohn’s, particularly during a flare-up.  In the 4 days Sawyer’s been in the hospital, he’s probably only eaten a total of about 250 calories.  He’s only drunk a total of about 20 ounces.  This is obviously not adequate nutrition nor fluid intake, but the hospital has kept Sawyer hydrated with IV fluids.  We’ve struggled with Sawyer’s decreased appetite his entire life, always having to “force” him to eat 3 meals/day, and within those 3 meals, reminding him to “take bites”. :-)  We’ve learned that most Crohn’s patients have a decreased appetite and are smaller in stature, particularly if plagued by Crohn’s as a child.  That definitely matches up with Sawyer.


We’re told that Sawyer’s appetite should increase after the Remicade reduces internal GI inflammation and ulcers, but we’ve run into a little snag that is delaying the start of Remicade for Sawyer.


In order to begin Remicade treatments, Sawyer must have a negative Tb (tuberculosis) test because if a person has active or even latent Tb, they are at high risk of death on Remicade.  Patients with autoimmune disease are less likely to show a positive reaction to a Tb test (even if they truly have Tb), so the Tb test is administered with a control test in order to insure validity.  Well, Sawyer didn’t have a reaction to the injected Tb test (which is good) , BUT he also didn’t react to the control injection, which makes the negative Tb reading invalid.  The control injection is supposed to cause a reaction in everyone, so when one doesn’t react to the control, it means the Tb injection is not considered a valid test.


So, a chest X-ray was ordered to disprove Sawyer has Tb.  That reading was “pristine”, according to Sawyer’s gastroenterologist, but there’s still another factor to consider.  Technically, Sawyer could still have latent Tb that wouldn’t show up in the chest X-ray, so that requires a blood test, which was drawn this morning.  However, the blood test can take up to a week or so to get it back, and there’s a possibility that the blood test can have a determination of “undetermined”.  Ugh.


So, the new plan for Sawyer is a little different than expected.  Sawyer was started on IV steroids to help reduce inflammation and calm down this severe flare-up.  He will continue IV steroids through tomorrow (Friday), then he will transition to oral steroids.  If Sawyer is able to have his pain controlled with oral painkillers, and if Sawyer’s blood pressure and other vitals and symptoms stay within an acceptable range, he will be discharged from the hospital Friday afternoon/evening.  He will lay low at home while we await the negative Tb blood test, then Sawyer will return to the hospital after negative Tb is confirmed and he will receive his first Remicade infusion treatment.  This will be done in the hospital, but shouldn’t require an overnight stay, unless there are complications.


So, that’s the update for today.  Sawyer is a sick guy, but his spirit is always positive.  He’s a strong warrior who doesn’t let things get him down too easily.  He just says he wants to feel better, so whatever it takes to get him there, he’s in agreement.  Of course children don’t understand the long-term prognosis, risks, etc., but that’s OK, we don’t want or need that stress in our lives anyway.  God’s Word commands us not to worry, so He gives us many times daily to practice our obedience.  Matthew 6 reminds us not to worry about tomorrow, so we obey that and simply live for today.

Tuesday, July 3, 2012

Crohn’s It Is

Sawyer is feeling much better today.  He no longer has the uncomfortable Ng tube and he no longer has to have the nasty solution of GoLYTELY which made him extremely nauseated and caused severe stomach cramping (not to mention the awful clearing of his colon).  Sawyer had a beyond miserable night, but His  mercies are new each morning.  We praise God for the mercies He has poured upon Sawyer today.  No more nausea, controlled pain with good meds, the freedom and ability to drink and eat, plus a TV with Sony X-Box and DVD’s, too.  Lavish luxuries for our mighty warrior on this day.

photo 3

Sawyer had his colonoscopy and endoscopy this morning, and it’s official, he has Crohn’s Disease.  Sawyer’s gastroenterologist wasn’t able to insert the scope further than the sigmoid colon (lowest portion of colon) due to the severe ulcerations.  He felt that the camera would perforate the colon due to the continuous pattern of very deep lesions throughout the sigmoid colon (which have caused the colon wall to be extremely thin at the sight of each ulcer), so he was unable to view the rest (majority) of the colon.  Sawyer also has has two severe protruding rectal fistulas with ulcerations and a secondary infection, which is the cause of the majority of Sawyer’s intense pain.  The limited findings/viewings confirmed what the GI doc suspected yesterday—Crohn’s Disease.


Photo warning—if you prefer not to see the interior of Sawyer’s colon, skip the following photo.  Sawyer gave me permission to post a photo of his colon, which illustrates the lesions/ulcers (white spots in the photos) as well as the inflammation (red spots in the photos).  We have lots of photos, but I just took a snapshot of the photo printout the gastroenterologist gave us.  The photo below shows one small section of Sawyer’s sigmoid colon.






photo 3


Sawyer will also have another test done tomorrow that is similar to a barium swallow study, but it will test for blockage and inflammation in the small intestine since it couldn’t be seen with a scope.  Crohn’s disease attacks the entire GI tract, so the GI doc needs to figure out if anything else is going on.


Sawyer will begin IV antibiotics to treat infection.  The infectious disease doctor will visit with us later today.  The gastroenterologist took several biopsies to send off for further testing, and pending those results, the current plan is to begin Remicade infusion treatments.  There are several options available for treatment/management of Crohn’s, but because Matt (my hubby/Sawyer’s daddy) has responded so well to Remicade when all other options failed, we believe this is the best route to try first with Sawyer.  It also works quickly, which is vital to get Sawyer back to health.


Sawyer’s lab work is wacky, too, so various specialists are reviewing those.  His inflammatory markers are beyond high (3.0 is considered high while Sawyer’s are at 16.4), but that goes with the Crohn’s diagnosis.  There’s a variety of other wonky findings/indicators that are being investigated.  That will take some time.


Sawyer will remain in the hospital until Thursday at minimum.  If all goes well, he will be able to begin his Remicade infusion treatments Thursday.  He may get a PICC line today for various reasons, but the hospital’s pediatric doctor assigned to Sawyer is investigating with other specialists to determine if that is necessary.


Even with all of these findings, we know that our Abba Father is in control.  He is still the same God that He was yesterday and will be the same tomorrow.  He is a loving and gracious God, and He has a plan in all of this.  He doesn’t make mistakes, and He formed Sawyer in His image.  We trust wholeheartedly in our King of kings.  Blessed be the name of the Lord.

Sawyer’s in the Hospital


As an infant, Sawyer was diagnosed with allergic colitis.  He was failure to thrive because his little body suffered from malabsorption caused by the colitis.  Sawyer’s daddy has ulcerative colitis, so it’s believe Sawyer inherited this genetic autoimmune disease.


Sawyer has not had any flare-ups in about ten years, which we’ve been most grateful for.  He suffers from severe food allergies, but as long as Sawyer avoids the foods/ingredients he’s allergic to, he’s fine. 


Over the past couple of months, Sawyer has started to slowly exhibit symptoms of gastrointestinal disorders.  He began having blood in his stool, so we took the first available appointment with his gastroenterologist, which wasn’t until August 7.  In the past two weeks, Sawyer began having intense pain, so his pediatrician ordered some labs.


Friday evening the labs came back with some extreme levels of a variety of things, mainly inflammatory markers that were sky-high elevated, indicating Sawyer was indeed having a gastro flare-up of some sort.  Our pediatrician consulted with Sawyer’s gastroenterologist, and they agreed Sawyer was top priority for an appointment with GI.


However, Monday morning (yesterday) came, and the GI office said they wouldn’t be able to fit him in unless there was a cancellation, which most likely wouldn’t occur until the end of this week.  Poor Sawyer was in such intense pain that we decided it would be best to go to the ER of Dell Children’s Hospital.


Sawyer’s gastroenterologist saw him in the ER, and after a physical examination, reviewing the labs from our pediatrician, and asking Sawyer a bunch of questions, he said, “Sawyer, is it OK if I talk to your mom privately in another room for a few minutes?”


That’s never a good sign.


The gastroenterologist explained that he believes Sawyer has Crohn’s Disease, along with another disease/disorder that causes inflammation and pain (can’t recall the name right now). 


Sawyer was immediately admitted to the hospital, and was (is) considered acutely ill.  He is scheduled to have a colonoscopy, endoscopy, and barium swallow test around 9AM Tuesday so that his gastroenterologist will be able to diagnose him more accurately and come up with a treatment plan.


Poor Sawyer was already feeling absolutely miserable with a pain of 8 or 9 (out of 10), and then they had to insert an NG tube and hook him up to 3 liters of GoLYTELY, a horribly nasty liquid that cleans out the gut/colon.  (At least he didn’t have to drink the stuff!)  After only 10 minutes of getting hooked up to the solution, Sawyer got super nauseated.  The nurse gave him Zofran, but after about 1/3 of the first of 3 liters was in his stomach, Sawyer violently vomited up all of the contents of his stomach.  There was blood in his vomit.  There’s also blood in his stool.  He’s a very sick kiddo, and my  heart is aching for him.


My heart is also aching over another circumstance that I haven’t shared yet.  I’ve been working on that post and hope to share it soon.


Our family has really been under attack lately, so we appreciate your prayers.  We know the battle is His and He is VICTORIOUS.  Praising Him through this storm!  Blessed be the name of the Lord, who gives and takes away.  My heart will choose to say, “Blessed be His name.”


PS   Rejoice with us that Project HOPEFUL won the $50,000 grant!!!!!!  Thank you SOOOOOOOOOOO much for voting and sharing and helping them win this money that will help so many overlooked, forgotten, waiting, suffering children around the world.  We are thrilled that you helped make this possible, and we’re eager to see how God directs this money and multiplies it to help the least of these.

Sunday, July 1, 2012

Village of Hope Giveaway!

My precious friends, the Blocks and Uchereks, have put together an awesome giveaway as an incentive and reward for those willing to come alongside them in the journey to building Village of Hope, a holistic orphan care ministry in Guatemala.

Please read the info below from Village of Hope and RESPOND BOLDLY by praying, sharing, and giving.  After all, it takes a village to raise a child, and you're invited to be a part of the village that will be caring for orphans in their distress (James 1:27) in Guatemala.
From Village of Hope:

It takes a village to raise a child! – African Proverb

When God called us to start Village of Hope, we knew that HE
would put together the pieces and bring those that He would have serve
alongside us. We are completely blown away by all the people He has been
sending our way… but, then again, we really shouldn’t be blown away by how
great our God is and how HE provides to bring His work to completion.

As we prayed and asked the Lord to provide for the first
$20,000 needed for Village of Hope, God’s people stepped forward to provide an
incredible gift basket. From now until August 1st, you have a chance
to win!

The gift basket includes:

HOPE jewelry from Funky Fish Designs

Village of Hope t-shirt (your choice of color and

$100 TOMS gift card

$100 Amazon gift card

$100 itunes gift card

How do you enter?
-share on facebook, twitter, or blog: 1 entry for each time
you share (you MUST contact us at Christi@lifesongfororphans.org
to let us know that you shared)
-each $25 donation: 2 entries
-each $100 donation: 10 entries

To make a donation to Village of Hope, click here.

Village of Hope is a ministry of Lifesong for Orphans in partnership with Project Hopeful. The vision for Village of Hope was born out the knowledge that God has a heart for the least of these. Scripture reveals a God who is passionate about the sick, the widow, the orphan, the alien, and the poor.The purpose of Village of Hope is to provide family, faith and a future to the least of these by providing holistic orphan care to special needs orphans, primarily focused on those living with HIV/AIDS in a family-style setting.

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