Not for Karis… but her website has now officially moved to http://karisalmy.com/. Please update your rss feed subscription links to http://karisalmy.com/feed/ for all the latest about Karis. Thanks so much for your support!
Today we had a great surprise when we went to therapy! Our BINGO CHAIR and VersaForm pillow had been delivered! The Bingo is almost a cross between a stroller and a wheelchair. Mr. Will (our fearless Chair Guy) and Corinne (physical therapist superstar) spent over an hour tweaking the Bingo to fit Karis just right. The VersaForm pillow is a huge pillow that can be conformed to any shape you would like. Once it is in the desired shape you suck all the air out and it becomes very hard and holds the form. Corinne worked diligently to form the pillow into a chair for Karis to sit in! I will be sure to post pictures of our little lady in her new equipment tomorrow.
I continue to be blown away by God’s kindness towards us. Though a chair and a pillow seem like small provisions, they will make a huge impact in Karis’ life. This, of course, means that they will make a huge impact in her parents’ lives!
The chair enables her to sit up like her peers do so that she can play with her toys more readily, breathe easier, and sit in proper alignment so that her scoliosis does not worsen.
Yes, I am aware that the God who spoke the universe into being has the power to remove my daughter’s illness as I am typing this. However, I also realize that, at least for now, He has chosen not to. Today, He has chosen to show Himself faithful by providing a chair and a pillow and if I did not rejoice in that blessing I would be missing the point.
God is not good IF He completely heals Karis.
God IS good. He defines it in His very being and we yield to His definition, not our own.
God is not faithful IF we are financially provided for and all our physical needs are met.
God IS faithful. He provides all we need to make it through each day, whether we choose to recognize Him or not.
Psalm 115:3 says,
“Our God is in the heavens;
he does all that he pleases”
His choices might not make sense to us, but that is okay because we see dimly. What matters is that my Lord knows my needs and He is initmately acquainted with my heart and my thoughts. Today I needed a chair and a pillow for my little girl. I needed to see her SIT UP like a one-year-old and put her hands on a table. Something so small, and yet our amazing God knew… so He provided.
I still pray every day that He will take away the Krabbe and I will pray it every day that she still has this horrible disease. However, I also don’t want to waste it. This is what He has allowed and it must be for a reason, so we will choose to glorify Him and wonder what He is doing. I cannot tell Him I’m grateful for Krabbe because that would be a lie. I’m grateful for what He is teaching me about Himself through Krabbe… and today I am grateful for a Bingo.
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
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,
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.
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!
Normally I post a reminder a day in advance, but life has been a little busy 🙂 TODAY our little love bug is 11 months told!!! Praise GOD! Please consider taking some special time to pray specifically for her healing. It would be such a blessing to our family. I also believe that these “days of prayer” on the 29th of every month truly honor the Lord because it is our way of acknowledging His power and sovereignty.
Karis has been doing well since her surgery. Her incision site and g-tube insertion site both look very clean and seem to be healing well. Stretching her stomach back out to its previous capacity has been a painfully slow process, but we’re trying to be patient! We typically feed her and then 30 minutes later have to pull the entire feeding back out to release the air that has been created from digestion… then we put it all back again.
The biggest concern in the healing process is that a few nights ago Karis actually spit up what looked like light brown coffee grounds. For those of you in the medical field you know that’s never good because it typically means a GI bleed. I have noticed little light brown specks in her GI contents every day, but she doesn’t seem to be in any distress. I spoke with her surgeon’s nurse and she said to monitor Karis, but if she doesn’t have any other symptoms she should be okay. =/ Please pray that all is well in her little tummy and that the little specks are nothing serious.
Karis seems to be a lot happier since her surgery. She is moving around much more (kicking her legs and doing arm circles) and she wakes up from naps MUCH more gracefully than she used to (ie. no screaming!). Praise God!
Trevor will be starting a Leadership course at RTS in a few weeks and then in July he will battle Summer Greek. Until then we are thrilled to have some much needed family time.
Thank you for your prayers and words of encouragement. They NEVER get old 🙂