Slower is better

As you may remember, in March we took Karis (and Kales) to her appointment at the Rare Disease clinic in Pittsburgh.  The comprehensive report summary from all disciplines came back today.  This report includes impressions from the doctor, audiologist, speech therapist, physical therapist, etc.  Normally when we get these reports I take a deep breath and brace myself a little.  Though the team is very compassionate, the report is, of course, very clinical.  It’s hard to read that your child has the physical development of a 3 week old.  It’s hard to hear that things maybe have regressed a little since the last visit.  I almost didn’t read this one because we had discussed their recommendations for Karis in detail, but of course I read it anyway.

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.”

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Erin

The Lord has overwhelmed me as I watch you all love Karis.  I watch the Lord work in amazing, tender ways as He prompts you to pray for her.  I have also seen a different kind of love, a unique love that God has given to certain people and it often brings me to tears.  He has buried Karis in their hearts and given them an urgency and burden to pray as if they were fighting for their own lives, not the life of my 2 year old daughter.

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.

 

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Stars on little legs

Hi friends,

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.

AFOs

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The good fight

Hi friends,

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!

 

 

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At the House

Thanks to coughing, clear lungs, and the grace of God, we were able to bring Karis home on Friday.  She has done really well and her oxygen has stayed above 95% on room air.  (We have oxygen at home, but thankfully don’t have to use it!)

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!!

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Bright green. The unseen. Funny Mommy things.

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

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