Kickball!!!

IMG_1464We loved every MINUTE of Kickball for Karis at with Project Outreach in Spanish Fort, AL!!  The students were kind and so refreshingly genuine.  Our family was assigned what I called The Squad of teenagers whose sole purpose was to love on/entertain my kiddos and give us bottles of water and food.  I wanted to take them home with me.

Here are some of my favorite moments of the day:

*One of the teams granted Kales’ wish of kicking the ball and running the bases.  Check out her welcome into home base!

*After winning their game, a couple of the high school boys came up to Karis’ wheelchair and said, “That was for you Karis!”

*FRIENDS!  We met so many new friends and even got to spend time with friends we have loved a long time.

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We also want to give a big thank you to Wind Creek at Atmore who sponsored the event.  Their contribution was an incredible help to our family.

THANK YOU again Project Outreach!  Y’all keep being you :)

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April 2016

Friends I’m so sorry it has been such a long time since I’ve done a comprehensive update on our girl and our family.

We are not verIMG_0422y deep into 2016 and it has already been a very eventful year.  Miss Karis had pneumonia twice last Winter so we have been very careful with her this Spring.  Overall she is doing very well and we couldn’t be more proud of her.  In school, she is working hard on her pencil grip using a grip support her teacher brought for her.  She can write when we support her elbow and forearm to make the motions!  I have prayed specifically for Karis to be able to communicate more clearly with us.  The past few weeks she has done a great job using her eye gaze and even turning her head to show us what she wants :) YAY Karis!

Her biggest fan, Kales, turned FIVE whole years old on April 4th.  If you’ve been within a 10 foot radius of her this week, you’ve heard all about it 😉  She is such a to our family.

Kales stretching Karis' fingers

Kales stretching Karis’ fingers

We celebrated Ander’s second birthday in February.  Ander loves to be tickled by his big sister Karis and enjoys using her as a race track, zooming cars up her legs and down her arms.  He adores Kales, who has assumed the role of Ander’s life coach.The Lord has been so incredibly kind and generous to us.  We feel Christ’s nearness and love for us as He has provided several opportunities for us to rely more fully on Him.

  • Since last Summer, half of our home has sunk just over six inches.  The drop has had significant consequences on the structure of our home.  Because of the cracks in our foundation our living room floods every time it rains.  I mean- there is a kiddie pool of water in the middle of our living room every time there is a steady rain.  We’ve done all we know to do, but the issue simply won’t be resolved until we have the foundation repaired.  The structure is separating from the roof, causing large gaps where the roof and walls should meet.  Several of our doors don’t close, the windows in Karis’ room are crooked, there are cracks in the sheetrock throughout the house and the brick on the outside of the home is separating. Please pray for wisdom as we pursue speedy repair to prevent further damage to our home.
  • Last week I found quite a bit of water in the cabinets behind our bathroom wall.  I consulted with a plumber who concluded that there is a crack in the pipe that supplies water to our shower.  They are going to have to remove our sink and vanity so they can rip through the wall to get to the shower.  Basically, it’s a hot mess.  Our insurance company’s field adjuster is coming on Monday to estimate the extent of the damage, but I’m extremely hopeful that insurance will help cover this cost.  Please pray with us to that end!
  • As some of you may have heard, last week Trevor was in the hospital for five days.  Please pray that he recovers quickly!

As you can imagine, our family was not prepared to meet our entire insurance deductible all at once, especially while trying to gather and save funds for the extensive repairs that need to be done on our home- ASAP (approximately $22,000, including re-installing the floors).  We humbly ask for your prayer for wisdom and endurance during this particularly trying season.  We have also been overwhelmed by the generosity of our community and the body of Christ as many of you have rallied to come to our family’s rescue.  If you feel led to help, our amazing friends have provided several opportunities!

  1. My dear friend and Rodan and Fields business partner, Amanda Ready, has started a GoFundMe account for our family.  Funds donated here will go directly towards the $22,000 foundation repair:  https://www.gofundme.com/thealmys
  2. Kickball for Karis!  If you are in the Spanish Fort/Mobile area this Saturday 4/9 from 1-4pm, we would love to see you and Spanish Fort High School’s annual fundraiser for precious Karis!  Attendance is free and donations are welcome. Learn more about it here:

3.  5K for $5 with Stinkyfeet Athletics July 21st!!  My chiropractor recently shared with me about these really great fundraisers that Stinkyfeet Athletics is doing this year.  He asked if he could mention our family to the owner as a possible “charity” for one of their 5K for $5 events- and Stinkyfeet said YES!  I’ll keep you updated as we learn more details about this event!  Local friends, please visit and patronize Stinkyfeet Athletics at www.stinkyfeetathletics.com.  Also, if you are in need of chiropractic services, please pay a visit to Dr. Justin Brumfield.  I have had chronic, miserable pain with a bulging disc in my lower back and he has been incredibly helpful.  He practices out of Norville Chiropractic Clinic at 1000 Lakeland Square Set 400 in Flowood. The office # is 601-932-3855.  Tell him you’re friend of the Almys :)

4.  Rodan + Fields If you’d like to support my business and learn more about some phenomenal skin care, please talk to me about being a customer, consultant, or connector! 

5.  PayPal  I have had several people ask if the PayPal link on this site is still active.  Yes, it is! My PayPal email address is katealmy@gmail.com (under “Kate” instead of Katie).  PayPal donations will go primarily towards the bill from Trevor’s hospital stay, and then towards the foundation.

Thank you all so much for your support and prayers!  It’s humbling to be in such a position of need, especially when life hits you all at once…but my Bible says that being humbled isn’t such a bad thing 😉

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Stone Update, As Promised

Hello kind friends and prayer warriors,

Today we went in for a check up with Karis’ palliative team.  I brought the pieces of stone that she passed to submit to urology for examination and expressed to her palliative care doctor that there had been changes in her voiding patterns.  I was curious to see what things were looking like after the pieces came out and somewhat concerned that a remaining piece may be causing blockage.

Apparently there was discussion that the 4mm piece of stone she passed could have been from the RIGHT kidney, which contained a stone that was 4mm.  With this possibility in mind, her doctor graciously agreed to coordinate with urology to get us in for an ultrasound (which made for a very long morning at the hospital!).  The ultrasound technician viewed her right kidney first and found the 4mm stone still there.  She said it was small enough to pass and would not cause any blockage if it ever dropped from the kidney.  The left kidney showed two stones even smaller that what was found in the right kidney.  She scanned her bladder last and looked at the junction where the ureters should connect…there was nothing there.  NOTHING.  She told me, “There’s no ureter!”  I looked concerned and she laughed and clarified: The only time you can visualize the ureter on ultrasound is when there is a kidney stone dilating it.  I replied, “Oh good! I thought for a minute we had prayed the ureter away” 😉

The large pieces that of stone that Karis passed were indeed the 8mm stone blocking her left ureter.  There is absolutely no trace of it left. Thank you Jesus!

Of course we can’t look into Karis’ body without finding something suspicious.  The ultrasound technician found portions of her abdomen that had “free fluid.”  It makes sense because her abdomen has looked a little distended to me.  We are not sure exactly what has caused it.  I will address it with her palliative care doctor when we get the “final report” from the ultrasound.  Pressure caused by this free fluid could cause bladder emptying problems, which could explain some of the voiding problems she has had recently.

Thank you all for praying.  We are thrilled to rejoice with you in answered prayer.  {Quick reminder: The urologist said there was a less than 50% chance that this was possible! *Luke 18:27*}

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Kidney Stone Update

This morning Karis had her follow up appointment and X-Ray to check on the status of the large kidney stone they found last Thursday that was lodged in her ureter (directly above the bladder).

We went for the X-Ray first and fortunately the X-Ray team on staff this morning had all seen Karis in the PICU or ER and recognized us immediately. The tech spent a little extra time with me looking for the stone and she said it was hard to discern if it’s in the bladder or ureter because it’s just so close. I knew by Karis’ reactions to our bumpy ride to the hospital that the stone had definitely not dropped to the bladder. What I don’t understand is why they didn’t do another ultrasound. The ultrasound showed the precise location of the stone and we were even able to measure it and see urine flow around it. The X-Ray barely showed a blur.

Regardless, the stone is still there and the urologist agreed to let us continue to watch her and have it re-checked in four weeks. There is definitely still a possibility that the stone could shift in such a way as to completely block urine flow from the left kidney. If that were to happen it would be extremely painful and dangerous and we would have to take her in for surgery immediately.

On top of the breakthrough kidney stone pain, Karis is also struggling with some sort of virus or allergies. Her nose is running, eyes, are puffy, and she is sleeping quite a bit (which I still consider to be a mercy).

Please, please continue to pray for the stone to shrink and move *painlessly* into her bladder and out of her body. Please pray for wisdom as her nurses and I make every effort to facilitate that happening. Last Sunday our elders lovingly anointed Karis with oil and joined all of you in your prayers for her.
I am confident that God will not be confined to any time line in Karis’ life.
I am confident of His faithfulness to her.
I am confident that He treasures each of your prayers for His little Karis.

I will keep you updated as we watch and pray.

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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:

urinary-system

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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