I was coming to the end of the summary and my eyes were bouncing off the lines, “In summary, Karis is a 2 year 8 month old with Krabbe…” yeah yeah, I know.  Then my eyes bounced off this line:

“She presents with continued disease progression but at a slower rate.”

Wait…what?  Bounce back.  They said, in their very cold clinical report, that Karis’ disease progression was at a SLOWER RATE.  Hey!  That’s GOOD NEWS!  And they ADMITTED IT!  Yay God!  Please continue to pray for good news.  I sure would love the next report to say something like, “Medical miracle.”

Erin is one of those people.  The first time Erin and Karis met, the Lord etched Karis on Erin’s heart and she has stayed there.  Let me show you what I mean.  Take a second to read this:

http://www.hotchocolatewithgod.com/2011/07/25/the-gift-of-a-breath-thoughts-from-erin-marie/

Have you ever poured out your heart for someone so much that your focus stops being about you? I believe that one reason I was chosen to be Karis’ mom was because I needed front row seats to watch Aslan on the move. I get to watch Him at work as you hold Karis in your arms and love her in a Jesus-way that YOU don’t even understand. I get to watch Him at work when you tell me you woke up four times in the middle of the night KNOWING you were supposed to pray for my child’s healing. I get to watch Him at work when people who have never fasted before in their lives go without eating because they are THAT desperate to see Jesus on the move in Karis’ life. What an incredible honor it has been to watch Him work in you and in Erin.

Today is Erin’s birthday.

Karis made a video just for Erin, but I couldn’t help but share it with you.  It was longer than I intended but I couldn’t stand to cut anything.  She had physical therapy today and did SO WELL!  Praise the Lord! and happy birthday Erin Marie.  You are loved.

I’m sorry it has been so long since I have updated you on Karis.  Overall, she is doing very well, glory to God!  As the 29th approaches, there are a few specific requests that we would ask you to bring before the Lord on Karis’ behalf.  (Not that you only have to pray on the 29th- I just think it’s timely )

Karis’ GI system has a very hard time getting back on track after has been on IV antibiotics.  It often takes months for the cramping and diarrhea to subside.  (Yes- I give her probiotics every day)  Until then, we are taking her off of her prophylactic (preventative) antibiotic because it contributes to her stomach discomfort.  Please pray for wisdom and protection while she is not being covered by an antibiotic.  We have been told to wash our hands incessantly, use ridiculous amounts of Lysol, and not let anyone with so much as a sniffle come near her.  (As if I wasn’t neurotic enough!)  We are going to try giving her cod liver oil under doctor supervision as an attempt to keep her infection-free.  Ultimately we know that the Lord protects her.  Please pray that He will continue to do so!

On a more cheerful note, Karis finally got her leg braces for her standing frame!  They give her little legs extra support while she’s standing up.  Personally, I think they’re absolutely adorable.

Karis seems to be fighting off another “something.”  I really feel like it might be sinus-related.  We have increased her fluid intake and are giving her Tylenol and Motrin regularly because her temperature was a little high.  Things seem to be calming down today after having extra fluid on board, but she could still certainly use your prayers as she continues to fight the good fight in a very tangible way.  Trevor is going to John Piper’s “Together for the Gospel” conference next week and wanted to take us to Mobile while he was gone.  Please pray that Karis would kick this quickly so that it will be safe for her (us) to go.

It’s also a very special day in the Almy family because Karis’ little sister Kales, turns one year old today!  My GOODNESS how the time flys! 

I'm One!

Karis was doing SO well that we attempted to go to church today, but it proved to be a little too much, too fast.  Hopefully we will be getting the Vest this week, which is a device we used at the hospital to help mobilize the mucous in her lungs.  Her little nose is swollen from all the deep suctioning we’ve had to do the past two weeks, causing Karis to make a loud snoring sound when she breathes   Please pray for nice, open airways for our sweet girl who has been through so much!

Thank you for your prayers and encouragement.  Thank you also to the sweet women who have come to our home or made us meals.  It makes such a HUGE difference!!

Kales is very confused about where her sister has been and wanted to go find her

For those of you who don’t know from Facebook, Karis has been in the hospital the past four nights due to pneumonia.  We caught it really early, so we think the infection is under control (after some antibiotic swapping).  The problem is, Karis is incredibly weak from all of the respiratory therapy and the pneumonia.  She just isn’t able to cough right now.  We can loosen up everything in her chest but it is just going to stay there until she is able to cough it out.  (And yes, we have been using a cough assist)  The skin on her face is beginning to break down from all the masks being placed on her face.  Her tiny little nose is sore and bloody from deep suctioning.  She has been sleeping the past two days.  Please pray that it is a deep, strengthening sleep that restores her and allows her to cough.

Another concern we have is that Karis is continuing to have more extremely bright green stomach contents.  Blood work has shown that her liver levels are high.  It could possibly be inflammed due to gallstones, or it could just be due to the pneumonia.  She will have an ultrasound today for a look at her liver and gallbladder.

As I was sorting through these things and felt the worry rise, I received some much needed encouragement from a precious friend (we’ll call her Jill).  She reminded me not to focus on anything but the UNSEEN.  Counter intuitive, isn’t it?  When you’re in the hospital all you’re presented with is EVIDENCE.  Numbers…xrays…lab results… but God tells us in His Word, “ Now faith is the assurance of things hoped for, the conviction of things not seen.”  (Hebrews 11:1 ESV-emphasis added)  What a precious reminder that Karis will cough at the time that God has appointed her to cough (and I believe He will do this through your prayers, by the way!) and that she is safe and secure and we can trust in what we don’t see. 

I have also been hiding our family’s verse in my heart the past five days and wanted to remind you of it, too   ”Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead. He delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will deliver us again. You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many.”
(2 Corinthians 1:9-11 ESV)

The Lord has placed one particular respiratory therapist, Sara, in Karis’ life who has been integral in her healing.  Sara has been her night RT every time she has been hospitalized since Kales was born.  I have been sleeping in the bed with Karis and every morning Sara likes to play the game, “What you said in the middle of the night.”  It has been some much-needed comic relief during these tough days when our family has been separated, so I thought I’d share a few with you.

1- Every time Karis is in the hospital for respiratory problems she has used the cough assist, IPV machine, and had chest percussion therapy (CPT).  Sara reported me helping her position Karis for CPT.  I was completely asleep the whole time.

2- Sara: “Hey Katie, did you want to use the Vest or IPV for Karis this round?”  Me: “Karis hasn’t ever had that thing before.”  Sarah: “um..what?”  Me:”The IPV”  Sara: “Go back to sleep, Katie.”

3-This was the first time we were praying for Karis to cough.  It was 1:15am and Sara had just finished using the cough assist, IPV, and doing CPT on Karis.  I was lying right next to Karis and slept through the entire thing.  Sara did a deep suction on Karis and Karis let out a big cough.  Sara said I sat up straight in the bed, lifted my hand and shouted, “PRAISE JESUS!”- then laid back down.  BAhaha!  I don’t blame her at ALL for being a little freaked out!

In our St. Patrick's Day green

On the airplane

Thank you all so much for your prayers and financial help in getting us to Pittsburgh to see Dr Escolar.  Pittsburgh is really a lovely city and it was very easy to get to all of her appointments either walking or via hotel shuttle.

I was a little anxious for Karis to have her MRI because last time she didn’t want to fall asleep for it. We had the MRI done first thing in the morning and she slept like an angel through the whole thing (I have no idea how she slept because it was SO LOUD).

From the MRI, Karis went to the audiologist who reported that her hearing was absolutely perfect (despite the deafening MRI ). Next we saw speech and PT and they remarked on how Karis was able to track objects and noises with her eyes.  She showed them her very best and we were so grateful!  Her little sister was a sweetie pie and cheered her on during the testing.

We played "Pass the Baby" on each of the four flights

Dr Escolar saw her next and her overall assessment was that Karis looks very good and very comfortable. She said that normally they see gallbladder problems in MLD, not Krabbe, but since Karis has suffered with gallstones she is going to start screening for it in Krabbe kids. It could be that they are suffering too and the gallbladder just wasn’t considered. Hopefully Karis’ experience will help other children.

After seeing Dr E we went to Children’s Hospital for a nerve conduction study.  Trevor and I had them try it on us first and it felt like a short little burst of static electricity. Shortly after the test began I noticed the neurologist looked confused. She asked if we had a blood test to confirm Karis’ Krabbe diagnosis.  I assured her we had and asked why.  The neurologist said that Karis’ sensory nerve conduction was completely normal.  Her motor nerve conduction was slightly delayed, but almost normal.  Tears streamed down our faces as she told us that she does all of the nerve conduction tests for Dr. Escolar and has never seen anything like this.  I explained to her that all of you were praying for physicians such as herself to be confounded.  Your prayers were certainly answered and I eagerly anticipate what ELSE our great God is going to do for His Karis.  She is such a testimony of His grace.

So grateful for Karis

  The Lord knew we needed a Leap Year! 

I feel like I’m literally swallowing pride as I type this, but the truth is that we need your help.  We have been searching for a while for something supportive that Karis can use to sit on the floor and play with her sister (or us!).  Karis has recently started using the StraddleSitter at therapy and it works beautifully.  It also allows Karis to have weight bearing on her arms, which is difficult for me to do at home.  She also uses a bench so that her toys are easily accessible and in her line of sight.  We really think that Karis would benefit from having this equipment at home, but unfortunately insurance won’t pay for another supportive device or a bench and we don’t have the funds to buy them for her. 

The cost of the StraddleSitter is $106.39 before taxes and shipping.  http://store.schoolspecialty.com/OA_HTML/ibeCCtpItmDspRte.jsp?section=61357&minisite=10021&item=82117

The cost of the bench is $139.24 before taxes and shipping. http://www.kayeproducts.com/pricelist.html

Karis in the StraddleSitter with a toy on the bench

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.