- So grateful for Karis
The Lord knew we needed a Leap Year!
Please pray for Karis as we celebrate 32 months of God-given life. Each month I’ve felt more of a sense of urgency to pray for total healing. I’ve been looking back at old pictures of Karis and pleading with the Lord for more of her- more expression, more mobility, more LIFE. We’d be so grateful if you joined us in this prayer. Specifically, I’ve noticed that Karis isn’t emptying her bladder fully, which is a common problem with Krabbe. What’s tricky is that both urine retention AND frequenent urinary cathing can cause frequent UTIs. Please pray for wisdom. Karis is having about 2-3 seizures a day. We’d like to not have seizures any more. Please pray they will stop.
Thank you so much for your incredible response to our need for help. Our sweet friend Emma (who also needs prayers for healing from Krabbe!) is getting a straddle sitter and her parents decided to buy Karis one too!! We are going to see Dr. Escolar next week and the expenses of the trip are well on their way to being covered. We are overwhelmed and grateful for the way you have loved on our family. God ALWAYS provides!!
Almost Normal
On the airplane
Thank you all so much for your prayers and financial help in getting us to Pittsburgh to see Dr Escolar. Pittsburgh is really a lovely city and it was very easy to get to all of her appointments either walking or via hotel shuttle.
I was a little anxious for Karis to have her MRI because last time she didn’t want to fall asleep for it. We had the MRI done first thing in the morning and she slept like an angel through the whole thing (I have no idea how she slept because it was SO LOUD).
From the MRI, Karis went to the audiologist who reported that her hearing was absolutely perfect (despite the deafening MRI
). Next we saw speech and PT and they remarked on how Karis was able to track objects and noises with her eyes. She showed them her very best and we were so grateful! Her little sister was a sweetie pie and cheered her on during the testing.
We played "Pass the Baby" on each of the four flights
Dr Escolar saw her next and her overall assessment was that Karis looks very good and very comfortable. She said that normally they see gallbladder problems in MLD, not Krabbe, but since Karis has suffered with gallstones she is going to start screening for it in Krabbe kids. It could be that they are suffering too and the gallbladder just wasn’t considered. Hopefully Karis’ experience will help other children.
After seeing Dr E we went to Children’s Hospital for a nerve conduction study. Trevor and I had them try it on us first and it felt like a short little burst of static electricity. Shortly after the test began I noticed the neurologist looked confused. She asked if we had a blood test to confirm Karis’ Krabbe diagnosis. I assured her we had and asked why. The neurologist said that Karis’ sensory nerve conduction was completely normal. Her motor nerve conduction was slightly delayed, but almost normal. Tears streamed down our faces as she told us that she does all of the nerve conduction tests for Dr. Escolar and has never seen anything like this. I explained to her that all of you were praying for physicians such as herself to be confounded. Your prayers were certainly answered and I eagerly anticipate what ELSE our great God is going to do for His Karis. She is such a testimony of His grace.