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Archive for the ‘From Katie’ Category

Heaven Stands

Hi friends ūüôā

I haven’t talked about the status of enzyme therapy lately, so I thought I’d share. For those of you who don’t know, Krabbe disease is characterized by a missing enzyme, the GALC enzyme. The idea is that if we can replace that enzyme the person with the disease would essentially be cured.

I emailed the company (Zymenex) that has developed the enzyme- they call it Galaczym. The CEO of Zymenex was kind enough to email me back and explained that our Galaczym was quite a ways away from being ready for patients. I have to admit that I was extremely disheartened to hear this news. I have been praying earnestly and pleading with the Lord for Karis to be one of the first affected patients to receive this enzyme. I know this doesn’t mean that she won’t be; we certainly can’t predict the future. But after hearing that it was a quite a ways off, my faith was shaken.

The fact that I was SO disheartened by this news revealed to me where my hope lies. I do not, I CANNOT trust in an enzyme. I trust in an Almighty God who knit Karis together in her mother’s womb. He intricately wove her into the beautiful child that she is. Bad news about a potential cure made my world shake… but Heaven stands. My Lord is not confounded. I will rest in His plan for Karis and trust that He is holding us until that plan is revealed.

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Check it out!

I have created a video for those of you who would like to know more about our family and Karis’ history with Krabbe. You can view it under the “About” tab on this site. I hope it is helpful!

Katie

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“Pray for Karis”

Hi friends! I have a lot of updates for you, so bear with me =)

Karis
Praise the Lord! Karis hasn’t thrown up in three days! I have prayed for a lot of wisdom on this issue and have started feeding her 4 ounces every three hours. This has been a great schedule for Miss Karis! She ate 20 oz yesterday and 20 oz today and has kept it down. I’m a happy momma =) We’re still hoping to get some guidance on her nutritional needs. She has perked up a great deal since her belly has been full, which is another answer to prayer. I have her on 3/4 tab of Klonopin every night and it seems to keep her relaxed without zonking out.

Project 629
I hope that you are still praying for our little one! If you need even more reminders to pray or want to spread the word, we’ve got you covered. I have been blessed with very dear friends who are passionate about being sure that Karis is prayed for. We have already ordered green “Pray for Karis” rubber bracelets. Magnets and other items bearing the “Project 629” logo are in the works. I will be sure to let you know when the bracelets arrive so I can start sending them out to you!

Lilburn Community Garage Sale
A good friend of ours, Krista Mullins, has purchased a spot at the Lilburn Community Garage Sale on behalf of Karis!!
The garage sale will be March 20th, 9am-2pm on Main Street in the parking lot across from City Hall in downtown Lilburn. Proceeds from the sale will go to purchasing items to raise awareness about Krabbe and the need for prayer. Please contact Krista if you live in the Atlanta/Lilburn area and are interested in donating items to the community garage sale, or if you just want to give her a hand! Her email address is kristamullins@gmail.com
For more information about the Lilburn Community Garage Sale, go to:  http://www.cityoflilburn.com/index.asp?Type=B_EV&SEC={AEF521FB-9D60-407D-8139-CE57AF4BACA2}&DE={8CE057E5-F333-40BB-A998-57F7C2D713CB}

We are so thankful for each and every one of you who check the blog regularly seeking new ways to pray for Karis. Please continue your earnest prayers friends. If there is any way our family can be praying for YOU please let us know!

In Hope,

Katie

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February 16, 2010

Thank you so much for your prayers yesterday.¬† We have had a much better day today.¬† She has held most of her fPsalm 32:7ood down, praise the Lord!!¬† Her “personal” professional photographer, Keegan McWhorter of Admoni Photography, came over and took some updated pictures of Karis.¬† As much as Karis loves Keegan, she was not very thrilled about having her picture taken today.¬† However, she did at least open her big, beautiful eyes a few times!

Sweet Mr. Trevor is on the mend from the swine flu.  He seems to be hanging onto a bad cough and congestion, but no longer has a fever.  If we get a good report from him tonight he might get his family back tomorrow =) 

Please continue to pray what you have been praying.¬† She needs to hold her food down so she can grow, heal, and thrive.¬† Please pray that the Lord would be gracious to Karis and choose to glorify Himself by removing this disease.¬† Pray also for wisdom as we are faced with decisions regarding Karis’ care.¬† Thank you for your faithfulness to pray!¬† I don’t know about you, but 6:29 has been a great reminder for me!

With hope,

Katie

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February 1 Update

Today has been a wonderful, wonderful day. I weighed Karis is morning and she was a whopping 13 lbs 10 oz!! This is a vast improvement on the 13 lbs 4 oz that she has been stuck at. For those of you who have been praying for weight gain and increased nutrition… THANK YOU! The Lord hears your prayers!

We went to physical therapy at 12:30 and Ms. Corinne started Karis’ session by doing a modified tummy time on an exercise ball. It was fantastic! The crying was at a minimum and the head control was at a maximum. Thank the Lord for Corinne! We also got a fun new “toy” at pt that will hopefully help with her positioning.

We’ve given up on the “higher” calorie formula and are sticking with soy. The other formula was milk-based and she experienced more vomiting, which completely defeated the purpose. She ate (drank?) 22 oz today and had a little bit of rice cereal at breakfast and a little bit of pears at dinner. She didn’t throw up until about an hour ago… and I’m okay with that.

Karis has been absolutely full of personality today, which has been SO encouraging for me to see. She has us VERY well trained. She’s a sassy little diva who likes to have her hair brushed, chapstick applied, and feet rubbed. I am more than happy to oblige. Karis also likes to be swayed to sleep and will let you know if she has not had adequate sway time. [A few nights ago she was screaming at the top of her lungs. I turned on music, pat her back, tried all the tricks. Finally I caved and laid her on top of my stomach. She looked over at Trevor and flashed a huge grin. Talk about sass!] If we’re still doing this when she’s a teenager, somebody please rebuke me =)

Please don’t stop praying for Karis’ healing. He does not get tired of listening to the desires of our hearts. We love her desperately and long for many many more years to enjoy this precious little life. Thank you for your faithfulness in pleading to the Father on her behalf.

With hope,
Katie

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Today's Nap Time

I am learning (perhaps a little too slowly) through our jouney with Karis that life is simply not going to fit into the perfect little routines that my A-Type, micro-managing self would like them to.¬† Apparently I’m not in control.¬† Each day has its highs and lows, ups and downs, that cause me to lean on Christ just a tad bit more than I did the previous “low” or “down.”¬†¬†Most of yesterday¬†was a “down.”¬† Karis was completely out of it all day long.¬† I knew in the back of my mind that it had to be the effects of increased Klonopin, but it looked so much like stage 2 or 3 of Krabbe that I was truly petrified.¬† I expressed my fears to Trevor and he stopped what he was doing to pray with me.¬† He prayed an absolutely precious prayer asking the Lord to glorify Himself by allowing us to see Karis’ healing on earth and asking Him to provide a way where the doctors say there is no way.¬† After the prayer Karis took a short nap.¬† When she woke up I was met with the most beautiful smile I had seen from her in DAYS… maybe weeks.¬† Her condition is not worsening… God is still holding her in the palm of His mighty hand and sustaining her health.

It seems like for every horrible day we get, the Lord blesses us with a miraculous day.¬† Today is the sunshine after the storm.¬† Karis has been interacting with me all morning and just flipped herself over on my lap even as I am typing this.¬† She’s tracking things with her eyes and soaking in the world around her.¬† This morning (and every Sunday morning) I watched First Presbyterian¬†of Jackson on TV.¬† Dr. Derek Thomas preached on the story of David and Goliath.¬† He challenged us to challenge our fears.¬† He asked us to¬†imagine what we are truly petrified of.¬† (I think it might have taken others listening longer than it took me.)¬† Then he reminded us that our God never changes.¬† The One who sustained us through the scary times and previous trials is the One who is with us now and will continue to provide for us and meet us perfectly where we need it.¬† David had an 8 foot man with 135lbs of armor staring him in the face and all he had to fight him was the power of God working in him.¬† I have a¬†daughter diagnosed with Krabbe staring me in the face and the only thing I have to fight it is the most powerful weapon anyone could want, Christ in me, the hope of glory.

I will not stop begging Him.  I will not stop trusting Him.  I will not be petrified.

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Scripture

I just thought I’d share some Scripture that the Lord has really used to encourage me.¬† (Thank you for praying for time in the Word!¬† He has certainly blessed me with it!)

Psalm 42:5 Why are you cast down, O my soul,and why are you in turmoil within me? Hope in God; for I shall again praise him,
my salvation and my God.

Ephesians 3:20 Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.

2Corinthians 4:7 But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. 8 We are afflicted in every way, but not crushed; perplexed, but not driven to despair; 9 persecuted, but not forsaken; struck down, but not destroyed; 10 always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies.

Psalm 40:17 As for me, I am poor and needy, but the Lord takes thought for me. You are my help and my deliverer;
do not delay, O my God!

2Corinthians 1:20 For all the promises of God find their Yes in him. That is why it is through him that we utter our Amen to God for his glory.

It would be such an enouragement to Trevor and me if you would be willing to share some passages that you have been praying over Karis, or Scripture that has impacted you in a special way.

With hope,

Katie

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