Archive for June, 2010

Karis is One Year Old

Welcome to the new website!! Thank you for joining us here.

Normally we spend the 29th of every month as a day of prayer and fasting. I typically list some specific requests on the blog and ask for Karis’ prayer warriors to spend a portion of the day asking God to heal her little body. While I still feel that we should petition the Lord to heal Karis because He commands us to (James 5:14) and it is the desire of our hearts that He would (Psalm 62:8), I would like to focus on something a little different on the 29th of this month as we celebrate her first birthday.

Even though we have many things to ask of God (okay, really one big thing), we have also experienced many, many blessings and grace upon grace. I’d like for you to spend some time giving thanks with me as I “count our blessings.”

#1. For preserving Karis’ life.
Most parents only get to keep their babies with infantile onset Krabbe for 13-14 months. We have loved and enjoyed Karis for 12 months and she is still going strong. Praise the Lord!

#2. For preserving Karis’ health.
One of the biggest struggles for babies with this disease is pneumonia. In fact, pneumonia can take their lives. I heard of a sweet little child with Krabbe who had been hospitalized 11 times by his second birthday. Karis has never been to the hospital for a sickness. In fact, Karis has never even had a cold. Have you ever met a one-year-old who had never had an ear infection or a cold? I haven’t! Praise GOD for keeping our daughter well.

#3. For His sovereignty.
Colossians 1:17 “He is before all things, and in Him all things consist.” Job 12:10 “In His hand is the life of every living thing and the breath of all mankind.” Praise GOD that He is not confounded by this disease. He is in control of all things and He holds in his hands every breath that our precious Karis takes.

#4. For His faithfulness.
I have challenged God to His face more times than I’d like to admit in the last 12 months, but 2 Timothy 2:13 says, “If we are faithless, He remains faithful; He cannot deny Himself.” No matter how frustrated I am or how much I am hurting, our God is so faithful. Join me in praising Him for never leaving or forsaking us, though we forsake Him daily.

I could go on for hours, but I have an important party to go to 😉 Would you be willing to add to my list? Please post some things that we can praise God for.

“Let all the Earth fear the Lord; Let all the inhabitantts of the world stand in awe of Him! For He spoke, and it came to be; He commanded, and it stood firm.” Psalm 33:8-9

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6.26.10 Update

Keeping Grandpa Cook's Chair Warm

Hi everyone!
Karis and I are still in Mobile watering plants, feeding animals, and collecting the mail. I have been working on some oil paintings and Karis has been busy being adorable. We’ve also been busy running errands and making plans for the big BIRTHDAY PARTY on Tuesday. Karis went with Anna and me to Sams and the grocery store to make some party purchases (Karis promised not to look). Later this evening Karis and I will be in the kitchen making desserts for Tuesday!

Trevor just finished his first week working for Admissions at RTS and is really enjoying it. He drove to Mobile after work on Friday so that he could spend the weekend and Karis’ birthday with us! Trevor is really looking forward to starting Summer Greek in July. Karis and I decided that we would love to “audit” the class with him… her name, after all, IS Greek 🙂

We are all adjusting well to g-tube life. It seems as time passes her body is adapting more to getting food straight into her tummy. Right now we are doing about half of her daily feedings by mouth and half through the g-tube. All of her medicines are through the g-tube because she chokes on thin liquids. I will continue feeding her by mouth as long as she continues to not choke on feedings. The work we’re doing with the Vital Stim has really helped her to swallow more efficiently! Praise the Lord!

While we were at Sams I bought Karis some Vanilla Pediasure. It smells a whole lot better than Soy Enfamil and it is already mixed, which makes life a LOT easier (no, I’m not one of those Super Moms who tastes everything she puts in her child’s mouth). Not only does Karis prefer the taste of Pediasure, but it packs 6 more calories per ounce than her concentrated formula. That’s a lot! I plan on making an appointment with her gastroenterologist and nutritionist when we get back to see what our feeding goals should be now that she’s one whole year old.

Don’t forget that when you visit this site starting Tuesday you will see a WEBSITE! Don’t worry though, you can still get to the blog for updates if you click “The Latest on Karis” tab 🙂

Love to you all,

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Our Little Button!

Hello friends!!

I am very disappointed that it has been so long since I’ve updated you about Miss Karis. We have been a busy little family. One of the greatest developments is that Karis finally got her g-tube “pigtail” switched out for a dainty little Mic-Key button (or Minnie button, as Trevor calls it). It is basically a little port into her stomach that can easily be covered by clothing so that no one can see it unless we attach the tubing. Yay! Another bonus to the Mickey button is that it has an attachment that conducts air much more efficiently than her old tube. This means that we are SLOWLY but surely winning the battle of air in the baby’s belly. Obviously, the less air that is in her tummy, the more food we can fit it. However, despite the struggles with feeding, Karis is holding her own at a slender 17 lbs and 27 inches.

We are still faithfully going to physical, occupational, and speech therapies every week. I haven’t noticed much actual improvement in PT or OT (correct me if I’m wrong Candace or Corinne!) but we have been a little more conservative since Karis had surgery this month. Hopefully we will get her back in prone position (on her stomach) now that we have the Mickey Button, which will enable her to work on strengthening her neck muscles.

Karis has been showing improvement in speech therapy though! Katy has been using the Vital Stim on Karis twice a week and it seems to be helping her increase strength in her swallowing muscles. Karis’ intentional noises were becoming few and far between, but they seem to have returned a little in the past few days. She gives a sweet little sigh and “mmmm” when she eats by mouth, voicing pleasure. She voices displeasure by giving an actual cry (which is honestly a very cute cry) or by making an “ahhgah” noise. We have not seen any smiles since a few weeks before her surgery. We would love it if you would ask the Lord for smiles 🙂

We are eagerly anticipating celebrating her birthday next Tuesday! Praise the LORD for twelve whole months! Something very important that I neglected to add to Karis’ wish list was books. She loves to be read to and our ESV Study Bible doesn’t have very enticing pictures… We have all of R.C. Sproul’s childrens’ books but they are a little long for one setting. Any book that is appropriate for one-year-olds would be appropriate for Miss Karis.

Thank you all for your love and support. So many of you have been faithful to visit the blog even when I haven’t posted anything! We are so blessed to be surrounded by so many people who care deeply for our daughter and for our family. Keep praying, friends.

With hope,

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Love for Karis!

Being a big girl on the couch

Hi friends!
Several (very gracious) people have been asking us what to get the little Sweetheart for her birthday and I am more than happy to share suggestions. Karis is in need of toys. 🙂 hehe. It’s true! What she really needs is “cause and effect” toys that she can play with while she’s lying on her side. Karis is mentally at the same stage as other 12-month-olds, but she does not have the physical abilities of children her age, making finding appropriate toys tough. I have created a “List” for Karis at Target for people who are interested in getting her a little birthday gift.

Other GREAT options are the VTech Interactive Learn and Play Zoo and the Leap Frog Baby microphone. The microphone is perfect because it LIGHTS up (she loves lights!) and says numbers and colors when she touches it.

Thanks so much to everyone who has asked what to get Karis. It’s extremely gracious of you to think of her on her birthday.

We love you all!

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