Okay, so the UNC update pretty much serves as everything that I’m grateful for 
Please be sure to read our little prayer request at the bottom.
Wonderful Things
Today was our clinical evaluation day. We spent all morning and some of the afternoon talking with/ being evaluated by Dr. Escolar, Tara (NP), and the clinic’s physical therapist. They compared their data from Karis’ last appointment and told us what they saw as far as progression or regression. I’ll try to break it down as much as possible.
Vision and Hearing
Despite being sleepy, Karis was able to track objects and noises with her eyes. When Trevor or I called her from across the room she made great effort to attend to us. She responded appropriately to a bell dinging and a rattle shaking. Yay She did not do any of these things at our first visit, except startle at the bell ringing.
Muscle Control and Tone
Dr. Escolar said she was very pleased with Karis’ muscle control. While Dr. E was standing over her Karis reached out for her repeatedly, as if trying to hold her hand (Pretty sure that warmed Dr. E’s heart!). I was very glad that she was able to show the doctors what she is capable of. Dr. Escolar said the she is obviously suffering from decreased muscle tone in her neck, back, legs, and eyelids, but this is certainly to be expected. What was NOT expected is that her muscle control was much better than her initial visit in March. The majority of kids with this disease have suffered from some amount of hip displacement by now. Dr. E said Karis’ hips are “perfect.” Thank you Jesus.
Growth and Development
Karis is currently in the 50th percentile for her weight to height ratio. Normally we would say “oh yay! That’s a little slender though..” Instead the reaction is, “hmm… lil bit chubby” Because of the difficulty Karis has lifting her arms, legs, and head, the goal is for her to be at the 25th percentile for her weight to height ratio. We are going to continue on her current feeding regimen (4 oz of Pediasure four times a day) and let her grow it out.
Suggestions/ Prescriptions
The physical therapist suggested some changes that I heartily agree with. First of all, she is going to push for one more day of physical therapy per week. We agree that it is benefitting her greatly and she could possibly progress even more if she had more therapy. She is also giving us “prescriptions” for more equipment! Karis will be getting a bath chair (which we talked about with Corinne) so that she is better supported during bath time. She will also be getting a STANDER! We’re thrilled about this piece of equipment. We will work up to putting her in the stander for 1-2 hours a day. It will benefit Karis by putting pressure on her hips, knees, and ankles which will help promote bone growth and prevent fractures! It will also help increase circulation, bowel activity, and lung function. Thanks Lord!
Finally, Dr. Escolar explained to us that the 3 most common infections for our babies with Krabbe are ear infections, bladder infections, and lung infections. She is going to put Karis on a very low dose of Bactrim. This prophylactic antibiotic will help prevent Karis from suffering from any of these infections… meaning the medication could save her life.
Prayer Request
The one thing that made Dr. Escolar say, “hmmm” about Karis was the fact that her anterior fontenelle (the plates on top of her skull) has not yet closed and it should have by now. Also, there is a buldge in the bottom of Karis’ head. If you take your head and feel from the back of your neck to the bottom of your head you should feel an upward slope. Karis’ head is rounded where it should slope up. :/ Dr. Escolar is going to have the radiologist take an extra careful look at that area of her head tomorrow during her MRI. Speaking of which, we go in tomorrow morning at 11am EST for Karis to be put under anesthesia for her MRI, spinal tap, and nerve conduction study. Of course, there is plenty that can go wrong. Please, please pray for her safety while she is under anesthesia.
Thank you faithful friends and family.
Love to you all,
Katie (and Trevor)
12 Comments
Wow! That is really great news! Definitely praying for a good day tomorrow, please keep us updated! I’m waiting with bated breath!
Will be praying extra hard tomorrow! What a wonderful update! By they way, don’t tell Karis she’s chubby. Girls don’t like that.
hee hee
I am praying and will be praying for up coming MRI ect… God is good with HIS grace and mercy and you and Trevor are so faithful to see HIM in all. Love you both Hugs and Kisses to all.
We will be kneeling in prayer with you tomorrow. Great news so far. Let’s have some more. I’ll put the word out tonight throughout Ciloa. TC&BG
Karis, Katie and Trevor,
So many great things to praise God for. It sounds like she is doing GREAT considering. We will continue to pray for you Karis through out your MRI tomorrow as well as every day for your healing. Karis, you give so much encouragement and faith to so many people. We love you.
Love,
Courtney Schell
Praying day and night for your specific requests and grateful to God too for the better than expected parts of Dr. Escobar’s report and the positive plans for the future. Much love to you guys – Cindy
Such wonderful news! So glad Karis was a little show-off! This calls for a verse:
Rejoice in the Lord always; again I will say, Rejoice. . . . The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:4-7. Grandad and I are praying always!!
Much love to you right now as you are in testing, and our prayers continue to undergird you day by day. You are held in the everlasting arms….may you and Karis dwell securely in God’s loving care. We boldly pray for God’s healing touch and give thanks and praise for all the many ways you have known God’s Peace during these days.
Sandra and I are praying each and every day for Karis and both of you. May the Lord put his arms of peace around you and comfort you. All hope is in Him who raised Christ from the dead so that we do can live.
such wonderful news…we have continously prayed for Karis (still baby Karis in the boys’ prayers)…she is a growing beautiful girl. We will continue to lift her up in prayers daily. May the Lord continue to give you strength. God bless you!
Dear Mr. & Mrs. Almy,
I learned of your daughter, Karis, from a colleage about a week ago; I am following up on a promise I made to myself to attempt contact with you and to start including your daughter (and you) in some special prayers I have been offering for another little girl who suffers from the same affliction. Her name is Emma Rilee Daniels and you can learn more about her by going to caringbridge.org and visiting cuteasaboot. I am actually praying that Jesus will heal her. I am well aware that this would involve a miracle healing and that miracles of healing do not happen very often (probably why they are called miracles) but there are precidents so I remain hopeful. I am seeking the help of St. Jude who is the patron of hopeless cases and he has a great track record and he works fast. The other person I am asking to approach Jesus is the centurion who obtained a miracle healing for his servant. I cannot find a name for him recorded in the Gospels; so I have given him the name, Maximus; he can correct me later. So, please know that prayers are storming heaven on your behalf. I will offer the prayer daily for your daughter until I learn that she has been healed or that our Lord has decided that He wants to go in another direction and give her something better; Himself.
Yours in the hearts of Jesus & Mary,
Arvin Brown
Thank you so much for your fervent prayers! We KNOW that God is listening!