Specific prayer request

Hi friends and family,

Thank you for being patient with me as I am slow to update you on Karis and the family.  What brings me to my keyboard today is the need for your very specific prayers over this next week.   Hang with me as I elaborate:

As you may or may not know, Karis has a history of kidney stone trouble.  We had yet to get a clear visual on the stones, but we had seen plenty of evidence of them.  Karis has been having some odd issues with her bladder lately in terms of not voiding completely even when using the urinary catheter and being more dependent on the catheter to empty her bladder.  I was suspicious of bladder spasms, and of course it’s always easy for the medical folks to chalk everything up to “disease progression.”  {Few things make my blood boil more than slapping this reasoning behind every medical issue Karis confronts.  MDs, NPs, RNs, and PAs, please don’t be lazy with people who have a profound, systemic disease.  They are still people whose bodies are intricate and they do not deserve to be defined by a disease.  Dig deeper and make sure you’re right before you jump to that conclusion.}

I contacted Karis’ urologist and set up an appointment to address my concerns.  The day before the appointment we noticed blood in her diaper.  I reported it to the urologist this morning and we got an ultrasound and X-ray of her kidneys, ureters, and bladder.  During the ultrasound, the tech found a very large stone (8mm at its smallest part) at the end of Karis’ ureter immediately above her bladder.  For those of you who aren’t as familiar with the urinary tract system, here’s a little visual for you:


The large stone has traveled all the way from the left kidney, down the ureter, to right above the bladder, causing a lot of pain and bleeding for our soldier girl along the way.  Right now the stone appears to be a bit stuck.  Urine can flow around it, but the urethra is dilating around the stone, indicating that it’s blocking urine flow which is quite painful.

The bottom line is that the stone has to move.  The urologist said there is less than a 50% chance that the stone will move into the bladder on its own.  Our hope is that once it’s in the bladder, Karis will be able to void it, even though it’s a large stone.  Right now we are looking at three options

  1. Surgically place a stent in the kidney and ureter to dilate the area around the stone.  Use a laser to break up the stone and leave the stents in for two weeks to give all the pieces a chance to pass through.  She would have a second procedure to remove the stents.  This is the most invasive option and would require her going under anesthesia twice.  It would, however, thoroughly remove the large stone.
  2. Surgically place a scope through her bladder and into the opening of the ureter.  If the surgeon is able to pinpoint the stone with the scope, he would use the laser to break it up and remove the pieces.  If this method was effective, it would require Karis going under anesthesia once.  If he is unable to get a “hold” of the stone, he would resort to option one.
  3. Pray for the stupid stone to get out of her ureter.  Karis is clearly uncomfortable, but it seems to come in waves.  I have asked the urologist to give us a week to pray about our decision.  This will give us a chance to give her lots of water and see if the stone will move on its own (that less than 50% chance).  Her nurse and I have come up with a little plan of giving her tea as a diuretic coupled with Ibuprofen as an anti-inflammatory for the urethra, flushing with water, and putting her in her standing frame (for gravity).  I’m discussing adding Flowmax with the nurse practitioner now.

Would you please pray with us that the stone would just move?  The Creator of the universe can move the very mountains that He formed.  He upholds the universe by the word of His power.  It’s nothing for him to nudge an 8mm kidney stone into a bladder and out of a body.  Please ask Him with us to be pleased to extend His grace to Karis in this way.  Anesthesia is extremely dangerous for our Krabbe kiddos.  It has been known to progress the disease significantly, particularly as children get older.  While Karis has held up fairly well under anesthesia historically, we are just not interested in taking that risk for her.

Thank you all so much.  I will update you next week when we go back for another X-ray of the stone.  OR I will update you when we find an 8mm kidney stone in her diaper 😉



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A sick little pancreas

Hi friends,

Those of you who follow Karis on Facebook might be aware that she has had some struggles with her pancreas since January.  We’ve recently learned that Karis has chronic pancreatitis due to pancreatic enzyme insufficiency. When Winter changes into Spring Karis typically has an increase in seizures from barometric pressure changes and all the pretty blooming things.  This year it looks like her normal battles with Spring are also at war with her pancreas.  We are seeing flare-ups with her pancreatitis every time she has sinus or upper respiratory congestion.

Fortunately we are able to give her pancreatic enzymes before each feeding to help her digest her food and absorb nutrients, but we are needing to monitor a little more closely than her current specialist seems to think because she continues to show symptoms of pain (and LOTS of seizures to go along with it).  Please pray for doors to open as we seek a specialist who will be more attentive to Karis’ needs.

As I may have mentioned before, Karis is still in need of a new cough assist machine.  Her DME company and her physician have both appealed to Mississippi Medicaid on Karis’ behalf, but they have denied her coverage for the $5000 machine twice now.  The new machine can be battery-operated for portability and in case of a power outage.  It is also digital opposed to being operated by dials that can be far too easily manipulated by little brothers and sisters.  The new machine would be safer and more effective for Karis’ needs.  Karis’ supply company has re-submitted a THIRD time and asked me to include a personal letter with the request.  Would you please pray that MS Medicaid would recognize that they are denying their patient something that she is very much in need of?

Thank you friends!

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A February Update

Hi friends,

I’m sorry it has been so long since I’ve given a comprehensive update on Karis and our family.

Kare is currently going through a bit of a rough patch.  The drastic changes in weather have her suffering with congestion and allergies.  She is currently on supplemental oxygen and breathing treatments around the clock.  I am also having to empty her bladder for her every four hours because she isn’t urinating on her own.  (This tends to happen when she’s not feeling well)  Please join us in praying that she feels better soon because we have some exciting things for her on the horizon…

Remember the awesome students at Spanish Fort High School and a little event called Kickball for Karis?  Well it’s back!!  Every year illness has prevented Karis from attending, but we are trying again this year.  Please pray that she will be able to make this month!  I know her heart would be so encouraged by the outpouring of love and support from the Spanish Fort community.  The students put so much time and energy into launching the event and it’s important to me that they get an opportunity to meet the child that they’ve invested in the past few years.

As far as the rest of the family, Ander will celebrate his first birthday on February 8th.  He is a full-fledged walker who is always ready to giggle and smile…and chew on any tube or wire belonging to his oldest sister.  Kales’ compassion and empathy towards her sister continue to grow as they both age and their relationship matures.  If only we could get the spirit of sharing to translate to her relationship with her little brother 😉

Trevor has entered into his second semester teaching and serving the 11th grade students at Terry High School.  He has initiated a Creative Writing club and Quiz Bowl team in hopes of inspiring a love for language and learning in his students.  What a stud.

I am continuing to pursue opportunities to work from home so I can continue to stay home with our three little blessings.  I have invested in an embroidery machine to expand my services beyond sewing.  If you have an embroidery/monogramming need, please contact me at katealmy@gmail.com 🙂

Please let us know if there are any ways we can pray for YOU!


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No, not that…silly!

Our little family takes up a lot of space.  This has been true since Karis got her trach but hasn’t really been a problem since Ander started crawling (and boy can he move).  We decided to look into renting a home, but the realtor my friend put me in contact with gave us some very legitimate reasons why that might not be the best solution for us financially.  We started praying through it and began looking for a home to purchase.  The Lord was so faithful every step of the way and has provided a home for us here in Clinton!  We close on our house next Friday and will move in that Saturday, the 15th.

We still have a few needs but we know that God provides at just the right time 🙂  We would be so thankful for your prayers as we make the transition from seminary housing into our new home- primarily prayers for Karis’ health and for wisdom as I set up her “mini ICU” in the new house.  Kales is extremely enthusiastic about the new home, but there is always a little transition angst in a three year old’s heart, so we’d appreciate prayers for her too!

If you are in the Jackson/Clinton area on Saturday, November 15th, the moving fun will begin at 8am!  Free donuts, coffee, high-fives, and “thank you” hugs for anyone able to help.

Thank you all for your continued support and prayers!

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Fall Family Update

Hi friends!

It has been a while since I’ve updated The State of the Family so I thought I’d let you in on new prayer requests and praises.

Karis and her doll, Hope

Karis and her doll, Hope

Karis has started her kindergarten year with a new teacher from Clinton Public Schools.  Her teacher is very energetic and enthusiastic about learning Karis so that she can teach her effectively.  We also try to be creative with her environment so that Karis doesn’t get bored.  Last Friday we were at the playground before school and Karis was so alert and responsive that I asked her teacher to come to the playground for school time.  Karis seemed to enjoy it, but I think we might not try that again until Mississippi inches closer to Fall.

Speaking of Fall…here comes allergy season.  Everyone in the house is sniffling and sneezing, including Kare.  With the “noxious stimuli” of a runny nose, headache, and congestion come more seizures.  Nothing makes me long for Heaven like watching my daughter seize.  She is still progressing on the Ketogenic diet, but whether or not it will be effective in seizure prevention remains to be seen.  Her dietician said that it took one patient a full year before noticing a therapeutic effect.  We are still hopeful that it will help.

Karis isn’t the only one who has started school this year.


With his Masters of Theology now under his belt, Trevor started his job as an English teacher for Terry High School in August.  The Terry High community has been gracious and welcoming as Trevor settles into the position.  I have developed a new respect for teachers as I have watched him scrub his classroom, set up a welcoming environment for students, leave early and get home late.  (And I will gladly join the Teachers of America Deserve Higher Pay club!)  Trevor has also started a creative writing club and scholars club at Terry, which I think might make him a “coach?” 😉

IMG_0445As I believe I mentioned, this summer I earned my certification as a professional medical coder.  While coding is a great field, it is such a specific position that employment has proven to be very difficult to find.   I’m looking specifically for a clinic that will allow me to do an orientation in their office, then take the work home with me.  Until I find a position of that nature, I have re-opened my Etsy shop to help supplement our income.  The latest collection is Blessings for Children.  You can check it out here: https://www.etsy.com/shop/katiealmy?ref=search_shop_redirect



My little sidekick, Kales, is growing up faster than I’m ready for.  Every day it feels like she is communicating a new depth of emotional maturity and understanding.  She is also growing physically and has absolutely no hesitation taking initiative in meeting her own needs.  When you’re not even three and a half, this can be both a blessing and a huge source of tension 😉  Along with her can-do perspective on life, Kales has a growing compassion for her big sister’s broken body and a heart for prayer that convicts her mama.




I was sure that Ander being such a big fella would buy me some time before I had to manage a mobile baby.  It turns out that he’s not just big, he’s also strong.  He will be seven months old tomorrow and has a steady, slow crawl down.  Nothing motivates this crawl like the glow of Karis’ bipap machine.  {Trouble}  He is truly a delightful little man and I’m holding on to my days of “baby” because they’re going by so, so quickly.



Finally, if you haven’t heard, our friend Jim has received a biopsy report clearing him of cancer.  Thank you to those of you who prayed with us.  Our hearts are rejoicing and praising God with the Kelly family.

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A Parable of Two Trees

Our family made a little trip south to visit my family in Mobile before school starts.  Trevor had to go back early for NEW TEACHER orientation!  He will be an English teacher at Terry High School this fall and we are praising God for His provision.

Yesterday I was outside where my dad planted trees to line either side of the driveway.  When Kales was born, he planted two Japanese Maple shoots at the end of the row of trees.  He named one “Karis” and the other he named “Kales.”  Daddy reminded me of the story of his Karis and Kales trees and I am always so overcome by it that I wanted to share it with you.

When dad planted the trees they were exactly the same size.  Just two little bitty shoots.  The tree that he named, “Kales” (Pictured on the right) began to thrive immediately.  It grew beautifully, just as a young Japanese Maple should.  The Karis tree did not grow as it should. It started to, but then it began to wither.  The center stem that should have supported the tree started to blacken.  I prayed for the tree (Y’all…His eye is on the sparrow.  He can fix a tree, right?)

"Karis" and "Kales"

“Karis” and “Kales

Daddy did everything he knew to do to make the Karis tree grow, but it continued to die.  He even had the soil around the tree tested, but results indicated that the environment for the tree was excellent.  Nothing wrong with the soil.

Next, dad called a tree expert in.  He examined the withering little Karis tree and explained to dad that there is a disease inside the main part of the stem.  Think of it as, I don’t know…tree myelin.  “It’s okay though,” the Tree Man said. “All you need to do is prune back the tree until the diseased part is gone.  You’ll have to do it in several stages.  It’ll likely take a while.”

It has been almost three years and my dad has lovingly and painstakingly pruned back the little Karis tree in hopes that the Tree Man was right.  He was.  Shoots are starting to form from the main stem and the tree that once had a rotted, diseased core is now thriving.  It is growing out, but taking it’s time growing up.

That’s okay.

We’ll wait for you…

little Karis tree.

And we’ll still pray.

Because His eye is on the sparrow.


“Are not two sparrows sold for a penny?  And not one of them will fall to the ground apart from your Father.   But even the hairs on your head are all numbered.  Fear not, therefore, you are of more value than many sparrows.”

Matthew 10:29-31


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