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Archive for April, 2010

I’m ten months old!

I just wanted to share with everyone what I did on my ten month birthday.

Love,
Karis

p.s. Sorry for spelling your name wrong Miss Candice 😦

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10 whole months!!

Hello sweet prayer warriors!

If you’ve looked at the calendar recently, you might have noticed that tomorrow is the 29th and our little Bug is going to be 10 months old! In keeping with the spirit of 6-29, we’d be so honored if you would join us in a special day of prayer for Karis’ healing. Some of us (including this momma!) will be fasting and you are welcome to join us in fasting if you feel led to do so 🙂

Just a few specific things:
1- First and foremost, please join us in PRAISING GOD for the healing He has already provided. Karis has not thrown up in 2 months and that miracle cannot being ignored. Praise Him also that she is doing so well! No pneumonia, no hospitalizations. Praise GOD!

2- Though we welcome healing in any form, I feel burdened to pray for Galaczym, the enzyme that Zymenex is developing. We might be able to help fund that research, which would be just wonderful. Pray that there would be no setbacks in the development of the enzyme and that it would be available for Karis sooner than they would ever have imagined.

3- Her G-tube placement and fundoplication will be June 2nd. It would be wonderful if we could start bathing that day in prayer.

What would we do without the body of Christ?? I’m overwhelmingly thankful for each of our intercessors. I love each of you and praise God for you.

With hope,
Katie

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Heaven Stands

Hi friends 🙂

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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Pictures from today :)

Just thought I’d share some pictures I took of Karis today so you could see how much she’s growing!!

My cousin Bryan came by to meet Karis on his way home to Augusta!

Sleepy girl, but those eyes are still big!

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The Latest

Hello everyone,

Karis had her appointment with the GI surgeon on Tuesday and it went well. We scheduled the surgery for the first week in June. If I am at all uncomfortable with Karis’ feeding abilities before then, the surgeon said that we could bump the surgery up. While Karis is under general anesthesia the surgeon will do the Nissen fundoplication procedure and then he will place the g-tube. The Nissen will be an “open” procedure and they will make an incision at the top of her stomach. The g-tube will be placed on the right side of her belly. We will be at Batson Children’s Hospital for about a week for recovery.

Trevor is doing his best to finish strong this semester. Please pray that he will find the time in the day he needs to write his papers and study for his exams.

I’m so humbled by the offers we received for website help! We went with our very first offer which was from Krista and Evan Mullins… about 15 minutes after I posted the need 🙂 Once it is finished I hope that you will find it to be a much easier way to connect with us and keep up with Miss Karis.

In Christ,
Katie

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Speech Therapy

Hello friends!!

Karis had her first speech therapy session on Thursday!  Her speech therapist, Katy, is using relatively new technology called a VitalStim to strengthen Karis’ swallowing muscles.  (Check it out in the video)  The goal here is to prevent choking and enable her to swallow thin liquids.  We will also be working on Karis making intentional sounds again.  We get to go to speech therapy every Tuesday before physical therapy and every Thursday before occupational therapy.

As far as the G-Tube and Nissen Fundoplication procedure, we will be meeting with the surgeon on Tuesday, April 20th at 9:30 am for a pre-op appointment and to decide a date for the surgery.  Thank you for praying.  I will keep you posted.

The medicine transition is officially over and I feel like I have my little girl full of personality back!!  Karis seems extremely comfortable (aside from the two front teeth she just cut!) and is moving and squirming like she used to.  Praise the Lord!

Also, I would very much like to turn Karis’ blog into an actual web site with a link to her blog, but I need professional help for that undertaking J  Does anyone know a professional who would be willing to help us on a limited budget?  If so, please send me an email at katealmy@gmail.com

Again, we are immeasurably grateful for your prayers and support. 

With love,

Katie

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pH Probe Study



Miss Karis had the pH probe inserted this morning. It took 4 different tries and 4 x-rays to get it in exactly the right spot. She was such a trooper- she wasn’t allowed to eat anything until they were done placing the probe. She has a probe attached to her back and a probe that goes down her nostril into her esophagus. Both of those leads are attached to a machine that records the pH in her esophagus for 24 hours. I have to press a button each time Karis burps, vomits, chokes, sits up, lies down, starts eating, and stops eating! I’m glad it’s only for one day!

When the nurses inserted the probe Karis squirmed, screamed, and fought them by grabbing her nose and the probe. I’m sure they were extremely confused about why I was so excited for her to be so combative. I told her therapists that next time we want to elicit intentional movements we’ll just have to come at her with a pH probe 😉

Thanks for all your prayers! I’ll let you know the results when they come in!

Katie

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