One Day Closer to *OHIO*

Kerissa • April 8, 2013

My parents, sister, and I leave for Cincinnati, Ohio in approximately 5 days!!!  Sooo glad.  Looking back, I know I wouldn’t have made it to April 13th without God’s grace.  I’m so so thankful my appointments are just around the corner.  As much as I don’t want to admit it, my health seems to be declining.  My left leg weakness is getting worse, I’m having uncontrollable eye movements more often, my muscle jerking is getting pretty severe all over, and this fatigue is just plain awful.  All that on top of headaches every day makes me pretty miserable.  I’m so tired all the time, and I wake up late every day.  Because of that, I sometimes don’t have breakfast or lunch, depending on what I want to eat.  And soon after I wake up, my eyes start stinging which makes me want to go back to sleep!

Anyway, our flight leaves on Saturday morning bright and early at 6 am!  We have a layover in Salt Lake City but will arrive in Ohio as early as 3 in the afternoon.  Hopefully we’ll know by Sunday whether there’s a room available at the Ronald McDonald House which is just across the street from Cincinnati Children’s.

*I see Genetics on Monday the 15th, then Neurology (4/16), and lastly, Pain Management (4/17).  Each appointment is over 2 hours long!  Thursday and Friday (4/18-19) is left open in case the doctors order more tests or refer me to other departments.*

Love this song by Jeremy Camp because it really inspires me to keep walking this journey for God’s glory.  My prayer going into this next step is that, whether the doctors give me a new diagnosis or no diagnosis yet, God will be praised and honored.

“Reign In Me”

I have seen so many teardrops
Fall to the ground
I’ve held the hand of God’s children
Once lost and now found

I have walked it and I know
That my King is alive
And no other one
Has the love You provide

I want all who I meet
To see You through me
I want all that I speak to be You

If there’s anything that I would pray
It’s that the whole world would seek Your face
And in spite of who I can be
Please reign in me
Reign in me

I know it starts with the desire
To give You control
To lay down all my dreams
So You have my heart in full

Lord I know this weary battle
It begins on my knees
In everything I want You to be pleased

I can see the waters rising
I can hear the hearts reviving
Through You there’s nothing we can’t do

Let’s carry the people crying
And be a generation fighting
To lead the lost into Your hands

If there’s anything that I would pray
It’s that the whole world would seek Your face
And in spite of who I can be
Please reign in me, oh yeah
Reign in me, yeah
Reign in me, yeah

Reign in me, reign in me
(In my heart , in my mind , in my soul
Be the Lord of my life, take control )
[x2]

 

P.S. Stay tuned!  I’ll try to blog every day while I’m there and post pictures with each update.

Letter to my GI specialist 💚

By Kerissa Lee • March 31, 2026
Dear Dr. Phillips, There aren’t enough words to express how thankful I am to have had such an amazing GI doctor like you these past 13 years. I think of all the hard challenges that have happened starting at age 20 and beyond: experiencing GI dysmotility, not being able to eat “normal” foods without terrible abdominal pain/distention, only tolerating soft consistencies like baby food pouches (which was not fun as a 22 year old!), needing an NJ tube placed down my nose, having a jejunostomy tube surgically placed, then no longer tolerating tube feeds, dropping down to 77 pounds, getting admitted the day after Christmas to start TPN, being surprised by the extremely high copper levels on my liver biopsy and starting treatment for that, going through septic shock which caused ischemic hepatitis (remember when my liver function test was 1674!), having sepsis 5 other times from multiple central lines and ports, requiring urgent surgery to remove my gallbladder, needing D10 added to my IV fluids for numerous mitochondrial crashes, and much more. Through all the highs and lows, you were there for me, and I truly feel like I hit the “doctor jackpot” to have had a GI specialist as caring, compassionate, knowledgeable, and kind as you. I shed quite a few tears to my chagrin at my last in-person appointment with you in February 2026, and I still do as I reminisce and write this letter. But, they aren’t just tears of sadness. They are also tears of gratitude—I know this journey would have been much more difficult if I didn’t have your wonderful care and support all these years. I’m so happy that I was able to get off of TPN back then after 5 years of being on it. Not only that, but I’m so thankful that I can eat orally to my heart’s content without pain and abdominal distention. I know that’s in part due to you, so thank you. From the bottom of my heart, thank you so very much for caring for me. I will never forget you, and I wish you all the best as you start your retirement. :’) With immense gratitude, Kerissa

J-tube update

By Kerissa Lee • March 17, 2026
"God is always doing more than we know, working toward a good we will one day rejoice in." -Lysa Terkeurst

Please pray ❤️

By Kerissa Lee • March 7, 2026
Hi, friends, I would really appreciate prayer. Some of you already know this, but at the end of January, I started dealing with an abdominal abscess right next to my j-tube. I looked back through my records, and that was my 6th abscess. :( Since then, it’s sadly been one issue after another. I won’t go into all that has happened, but I’d especially love prayer for my j-tube site. After the abscess, I had my tube changed to a new one on 2/27. The surgery nurse practitioner decided to try the next size up to see if it could possibly decrease some of the leakage, but unfortunately, that was the wrong decision. It’s too large, so now the site is leaking tenfold compared to my previous size. The small intestinal fluid that keeps leaking out around the tube is full of acid which is burning my skin and making it raw. 😭 If you want to know what it feels like, imagine having a bad burn on your skin…then, on top of that, imagine acid being poured onto the burn every hour continuously. That’s how much pain I’ve been in, and I haven’t been able to sleep very well until after 6:30-7 AM each night because the burn is so intense! :’( I could cry, and I have—that’s how bad the pain is… I would show you a picture of the site but it’s not pleasant. 🥺 I’ve been emailing the nurse practitioner every single day, asking to have the tube changed back to the previous size. She hasn’t been helpful. I’ve tried all of her recommendations, but they aren’t fixing the root cause. I had to get an x-ray with contrast earlier today to check tube placement. If she does eventually agree to have the tube changed, I don’t know how I’ll bear the pain of the procedure… Remember, they don’t use sedation for these procedures (my GI specialist is shocked they don’t!), and even though I’ve been asking for lidocaine to be injected for past tube replacements, how do I bear to have needles pushed into such raw tissue?! 😭 Please pray that I will be courageous and strong in the Lord. I think of the verse from Philippians 4:19, and it’s comforting: “And my God will supply every need of yours according to his riches in glory in Christ Jesus.” He will grant me the peace and strength I need to be brave. His grace is sufficient. ❤️