June 29, 2009

Seven years ago today I gave birth to Karis Elizabeth after 26 hours of labor in the Mobile Infirmary.  The routine heel prick performed in the first few moments of her life would have changed the trajectory of her life if the word “leukodystrophy” had been on the list of diseases tested in Alabama, but it wasn’t.  The Lord chose a different life for Karis and for those who love her.  He chose a life of suffering- praise be.

Because God, in His goodness, chose this path for us we have witness miracles.  We have had front row seats watching Him sustain, sustain, and sustain, then lift our hearts off the floor and sustain us again.  I don’t just mean Karis.  As her parents He has sustained our bodies, our hearts, and by the power of the Holy Spirit He has even sustained our faith.

Karis’ seven year-old body has survived:

g-tube surgery

hydrocephalus

brain surgery for shunt placement

dozens of pneumonias

3 “Code Blue” emergencies

gallstones

tracheostomy surgery

kidney stones

pancreatic enzyme insufficiency

chronic pancreatitis

UTIs

The list takes my breath away, but I have vivid memories of God’s intervention through every single illness and horrible incident listed above.  In the past seven years we have seen Christ.  It has been a treacherous, painful, exhausting, frustrating and heart breaking journey, but WE HAVE SEEN CHRIST.

I’m so incredibly thankful for the child who was born seven years ago today.  I’m thankful that He knit her together in my womb without mistake.  I’m thankful for the “trajectory” HE chose.  I’m thankful for our testimony that He has borne through so. much. testing.  Karis is our gift to steward and through her life the Lord has etched the meaning of her name on our hearts: Grace.

We are so excited to watch what He has planned for her next seven years.

Karis Almy ~ 3 Months Old

3 month old smiles

1 year old

1 year old

Our two year old

2 years old

3 years old

3 years old

(nearly)4 years old

4 years old

Karis

5 years old

6 years old

6 years old

7 years old

7 years old

 

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May 29, 2016

Our beautiful little “starter home” has turned out to be a lemon.  HA! I still love it and I’m still thankful for it.  The leaking in the bathroom I mentioned in the last post ended up being a result of the foundation damage- meaning insurance and our homeowners warranty won’t touch it.  So we lean into Christ just a bit more.

The foundation repair will take place the beginning of June and the floors will be replaced as soon as the repair is done.  The master bathroom has to be gutted because of damage caused by the leaking.  We will displaced from our home for over a week. Would you please pray with us that Karis will remain extremely stable and her equipment will behave and function properly while we are away?

We are truly indebted to those of you who have brought us before the Lord in prayer and/or donated to our family as we face what seem to be insurmountable expenses.  For now, it looks like He has just called us to be “daily bread” kind of people, and that’s okay :)

In Karis news, I had a very exciting IEP meeting with her teacher and Clinton Park special needs coordinator regarding Karis’ continuing education for the Summer! The coordinator attended a seminar this Spring regarding communication devices and we have come up with a plan to implement some of them with Karis.  The coordinator is going to work with Karis this Summer and teach her how to use the device.  We have attempted to communicate with Karis via eye gaze, but it’s not always reliable because she struggles with nystagmus (where her eyes involuntarily move rapidly- very frustrating when she’s trying to focus on selecting her “choice.”)  Since we still has some voluntary movement with her head, we are going to place switches behind her ears, so that she will be able to make selections with the slightest effort to turn her head.  We are all very optimistic that this could be the answer for her!

One month from today Karis will turn SEVEN YEARS OLD and I will be feasting instead of fasting!  I wish I could tell the the version of myself who started this blog so many years ago that I would be typing those words 6 years later.  But I didn’t need to know the future in order to experience the power of Christ’s sustaining grace…upon grace, upon grace.  And that’s the same grace I’m going to rely upon for the next 7 years, then the next, then the next, until I get to see Him face to face.

Thank you all for caring for our family <3

 

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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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