Since Karis can’t verbally communicate with us, we keep very detailed records of her days in effort to collect clues or notice patterns.  As the doctor was looking through the notebook I noticed that the number of Karis’ wet diapers were increasing.  At first I thought they were just a fluke or a sign of the UTI.  It has been two days now since I have had to catheterize Karis.  Every time I get ready to empty her bladder for her, she has a wet diaper on her own.  This is a child whose bladder was as big as her entire abdomen just a few weeks ago because she was physically unable to empty it. 

Remember Karis’ equipment list?  To those of you who have prayed for her catheter supplies, you can check them off the list and turn it into a “praise.”  There is absolutely NO explanation as to why she has regained her ability to empty her bladder on her own.  Jesus gets ALL glory on this one.

I also wanted to mention that I have been praying Psalm 3:1-5 (For those of you who know me, 3 also happens to be my very favorite number for about 33 reasons) over Karis every day.  I’d be honored if you wanted to join me:

“O LORD, how my adversaries have increased!  Many are rising up against me.  Many are saying of  my soul, ‘There is no deliverance for him in God.’  But You, O LORD, are a shield about me, My glory, and the One who lifts my head.  I was crying to the LORD with my voice, And He answered me from His holy mountain.  I lay down and slept; I awoke, for the LORD sustains me”

(I tend to think of Karis’ “adversaries” as her physical afflictions)

Thank you for your love and prayers for Karis.  Praise God for His mercies and miracles.

Please continue to pray for our girl.  This crazy Mississippi weather has given her a little congestion.

Can’t forget little sister

Kales

Today a friend of ours here at seminary sent Trevor and me a picture of this artwork hanging in his daughter’s room.  Lily is one of the many children who have been praying for Karis for a long time.  Her faith and pleading is so humbling.  She GETS it.  Jesus said to ask, so she asks.  Lord, when I get confused by what You allow and I don’t know what to say, give me faith to pray Lily’s prayer:  PLEASE, please, please HELP KARIS!! (times 1,000)

I am sorry it has taken me a while to update you on our girl.  Truthfully, I’ve been waiting for something conclusive to tell you.  I think it’s best to update you and ask for more specific prayer despite the ambiguity. 

I mentioned briefly in the last post that the urologist noticed something about Karis’ gallbladder.  Well, it turns out that our tiny little two year old has GALLSTONES.  Bless her precious self.  We think that her intense episodes of crying, groaning, and straining are gallbladder attacks, or Karis trying to pass a stone.  Her GI doctor gave us orders for testing that we will take with us to the ER if she has an attack again.  The tests will allow us to see exactly what’s going on in her body while she’s in such writhing pain.  In the mean time, we are treating the gallstones with medication that will hopefully dissolve them over the next 6 months or so, in hopes to avoid surgery.

Karis continues to groan, though we’ve noticed lately that she groans mainly at night.  We can occasionally get the groaning to stop if we elevate her head, but that’s not always a rule.  PLEASE pray for relief from this pain and from Krabbe.  I don’t understand why the Lord is allowing her to be so afflicted, but I know that He is good and He is holding Karis in the palm of His hand.  Please join us in asking Him for protection, provision, deliverance, and life.

Karis standing next to me as I type

They said that urine had not backed up into her kidneys and nothing looked traumatized or abnormal, which is certainly something to be thankful for (except there’s a little question about her gallbladder that they’re turning back over to her regular team to inspect).

It looks like there are two major possibilities. First, of course, it could be neurological compromise because of Krabbe. Though most families do NOT have to catheterize their Krabbe children, urinary retention varies and Karis might have just gone through an episode of extreme urinary retention that alerted us to what could be chronic urinary retention. The other possibility is that she’s retaining it for no reason we can pinpoint. The urologist explained that sometimes even typically developing children will stop urinating on their own and need to be catheterized without explanation.

Regardless of the reason, all we know is that it is best for Karis right now to catheterize her every 6 hours. This will give her a chance to void if she can, but will also empty her bladder to prevent infections or any other complications. So we’re adding another procedure to our regular routine, which is kind of overwhelming and really disheartening. We just really need prayer… especially Karis.

Speaking of praying for Karis. My sister and I were talking the other day and I mentioned to her that one way I pray for Karis is by going through each piece of her equipment and asking the Lord to remove her need for the equipment. Diane said she’d love to join me and asked me if I’d list it. I thought while I was at it I might as well share it with Karis’ prayer warriors. (It’s also a good tool to use while praying for healing on the 29th of each month.) Here they are, if you’re interested:

• Bi-Pap machine: Karis has sleep apnea, meaning that she has episodes of not breathing while she’s asleep. The bipap gives her constant positive pressure to keep her airway open so that she doesn’t have apnea. Pray for healing to her esophagus, for her airway to remain open on its own and that she would be able to take deep breaths, even while she’s asleep.
• Bingo:  Karis is unable to sit up without assistance and the Bingo chair provides the support she needs.  Please pray for healing to her spine and neck and strength for the muscles surrounding them.
• Catheters:  As you know, this is a recent development.  We insert a catheter into her bladder every 6 hours because her urinary sphincter is not relaxing on its own.  Please pray for healing of the muscles that control her bladder and that her brain would send uninterrupted signals to her bladder to make it relax.
• Cough assist:  This machine gives Karis a deep breath of air and quickly takes it back, producing the effect of a cough.  It hyperinflates her lungs in effort to prevent pneumonia.  Please pray for healing to Karis’ lungs, that they would be strong and she would breathe deeply enough to hyperinflate her lungs on her own.
• Diastat syringe:  Diastat is an emergency drug that we keep on hand in a pre-filled syringe in case Karis has a prolonged seizure that causes her to stop breathing.  Please pray that she would have NO MORE myelin-destroying seizures.  Pray for healing to her myelin.
• G-tube feeding supplies:  The muscles Karis uses to swallow have weakened significantly, to the point where it us unsafe to give her anything by mouth, for fear that she would aspirate.  Her g-tube, syringes, gauze, tape, etc. enable her to be fed completely through her stomach, bypassing her mouth and drastically decreasing the probability of aspiration.  Please pray for healing and strength to Karis’ tongue and all muscles involved in swallowing.
• Hand splints:  Karis has tone in her hands that cause her fingers to curl under a little bit.  It’s very difficult to use your hands effectively if there is muscle tone causing them to curl.  The splints straighten her fingers while she is sleeping and stretch out the muscles in her fingers and wrist.  Please pray for healing to her hands and that use of her fingers would be restored.
• Nebulizer:  The nebulizer delivers medication to Karis’ lungs when she is wheezing or has crackles in her lungs.  Please pray for complete healing and strength to her lungs, so that they would not need treatment.
• Oxygen condenser:  This is a constant source of oxygen that Karis uses when she has pneumonia and her blood is not getting the oxygen it needs to supply her body.  Please pray that Karis would not have any more episodes of pneumonia or respiratory congestion that would cause her to need oxygen.
• Pulse oximeter:  This machine measures her oxygen levels and heart rate.  Her O2 tends to be unsteady when she is having any kind of respiratory sickness or pain.  Her heart rate is all over  the place.  Sometimes it’s quite high and sometimes it’s alarmingly low.  Pray that her blood would carry as much oxygen as her organs need and that her brain stem would regulate her heart rate so that it would remain steady.
• Stander:  The standing frame allows Karis to stand completely erect, providing weight bearing to all of her bones (except for her arms).  Pray that the Lord would restore strength and function to her muscles, allowing Karis to stand up.
• Suction machine:  This is also an issue of esophageal weakness.  The suction machine is used to remove excess saliva from the back of Karis’ throat to prevent her from choking as she tries to swallow it back down.  Please pray for strong swallowing muscles.

I (Katie) took her to the ER yesterday and after cultures, lab work, and 2 xrays, they determined that she was dehydrated and constipated.  However, not much has changed after treating those two problems.  Her cheeks are flushed and she is warm to touch, but her temp is low.  We are going to try a few more avenues, but what Karis could use most is your prayer.  She is in distress and we are feeling very helpless.  We need wisdom from her Creator and Sustainer… the Great Physician.

Thank you for praying. If anyone has suggestions, we’re taking them!

Here is a video of Karis holding her head up and turning it from side to side during therapy Friday.  She did amazing, despite whatever it is that is making her feel so horrible.

As always, we would be honored if you would join us in fasting and praying for Karis’ healing today.  (Or just praying, if you do not feel led to fast.)  Specifically, please pray for Krabbe and leukodystrophy research.  The medical community continues to make incredible strides in developing treatment for Krabbe.  Pray for God’s blessing on the research, that He would be glorified through a cure.  Please also pray that Karis’ lungs would continue to remain clear and that Karis would remain healthy in this “germy” season.  Of course, we would also ask that you pray for Karis’ complete healing.

Karis and I are headed to the doctor’s office this morning for a post-hospital visit.  While it’s not a fun way to spend your birthday, there ARE lots of people at Batson Children’s Hospital who love Karis  

Karis and Mommy on Christmas Day

With hope,

Katie

Thank you for your continued prayers for Karis. Though she is still feeling pretty weak, she’s definitely on the mend from pneumonia. Last night she was congested and needed a good bit of suctioning, but after a breathing treatment this morning she’s back to sounding clear as a bell. The seizures are still being pesky, so please pray that they would subside so she could have a little relief.

We would also like to say a special, “thank you” to our local friends who have been providing us with MEALS! Karis still needs a good bit of attention (and sweet Kales always WANTS attention), so grocery shopping and cooking aren’t even on our radar. We are so grateful to those of you who have helped relieve that stress. We have had a meal or two from people we’ve never met before and see it as such a testimony to your servant’s hearts. Thank you!!

I’ll leave you with a short video of Karis tasting her first candy cane so that you can see her for yourself

Soli deo gloria,
Katie

Karis is continuing to give little coughs, but she would get better so much more quickly if she would cough more.  Please pray for supernatural strength in her precious little body to allow her to cough.

Finally, our family needs some prayer against spiritual warfare.  According to Ephesians 6:12 “We do not wrestle against flesh and blood, but against the rulers, against the authorities, against the cosmic powers over this present darkness, against the spiritual forces of evil in the heavenly places.”  I think Satan has realized that he is not going to win the pneumonia battle and is aiming his flaming darts from other directions.  The rest of Ephesians 6 goes on to describe how we should “take up” the whole armor of God.  Please pray that we would do so, so that we would stand firm in this trial and that above ALL, God would be glorified.

The doctors have been hesitating to let Karis go home. The infection from pneumonia has cleared up, but now that all the congestion has been loosened, her oxygen levels are suffering. It is going to take a while for her to get all the congestion out of her chest and we want to make sure there are no respiratory “red flags” when we go home. She has been moaning and aching, which is completely understandable. Please pray for the Lord to comfort her little aching body, for her oxygen levels to increase, and for the congestion to clear so that we all feel better about letting her come home. What a precious little trooper she is!