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.

Surgery Update 😊

By Kerissa Lee • August 21, 2026
Dear friends, I just wanted to thank you all so much for praying for me during my abdominal surgery on August 6th! 💚 All of your messages/emails really encouraged my heart! If you missed my previous post, I had to have an unexpected surgery to take down the jejunostomy tract and repair an enterocutaneous fistula (a rare complication from having a j-tube for 12 years). I truly felt your prayers, and the Lord answered so many of them as well! 🥹 My surgeon only had to remove about 1 1/2 inches of my small intestine which is great news! I was in the hospital for 4 days because my blood pressure was low and pain control was rough (it’s a long story, but pain management is complex due to a specific medication I take daily at home..). But aside from that and having an allergic reaction to the surgical glue, I’ve been healing well. Thank you again for praying!! God has been so faithful throughout this journey. I got a visit from my sweet foster nephew when I was in the hospital (2nd picture)! 🥰 I can’t wait until I can show you his face—he’s so adorable. 🩵 I’ve mentioned this before, but an important medication I take causes severe insomnia (still not falling asleep until anywhere between 3 AM-9 AM). 😞 But I saw my naturopath this past Monday, and she’s going to treat me for suspected cortisol spiking up during the night (which disrupts the body’s circadian rhythm). I’m thankful for the wisdom God gives her, and I’m excited to see if this treatment will help! It will take 6 weeks to see if there’s any benefit, but I first have to specially order it.. 

August 6th Surgery Prayer Requests 💚

By Kerissa Lee • August 6, 2026
"God is our refuge and strength, a very present help in trouble." -Psalm 46:1

Another surgery 😞

By Kerissa Lee • July 25, 2026
Hi, friends, I thought I wouldn’t be posting for a while since I’ve been doing really well, but I’ve hit a bump in the road again and would appreciate your prayers. 💚 This past Tuesday the 21st, after nearly 12 years living with it, I had my jejunostomy tube removed completely. I thought it was going to be a simple process and that the stoma (hole) would close quickly within 30 minutes like they said. That didn’t happen, though, as the stoma started draining a ton! I couldn’t even leave the lobby and had to go back up to the clinic on the 8th floor to have an ostomy bag placed to collect all the small intestinal digestive juices that continually drained. Unfortunately, I’m experiencing a very rare complication called an enterocutaneous fistula. 🥺 I’m disappointed this is happening, but I’m not exactly surprised since my whole medical case with Mitochondrial DNA Depletion Syndrome has been rare from the very beginning.. I also don’t heal well due to connective tissue problems from Ehlers-Danlos Syndrome (case in point: my port site issues back in May when I had to have a new one surgically placed on the other side of my chest).. 😞 The clinic told me to keep emptying the ostomy bag and monitor the output. It wasn’t a fun 2 days. This whole process has definitely made me so grateful to God that I’ve never needed something like an ileostomy! TMI, but I lost almost a whole pound of fluid because so much was gushing/spurting out of the stoma every time I ate or drank. Losing so many electrolytes, I started experiencing symptoms of dehydration—weakness, high heart rate, and headaches. So yesterday, I had to go back and see the surgery resident who basically placed another j-tube (it was so painful again!). 😭 This is a temporary “plug,” and I’m bummed to say that I have to go to the operating room to have the jejunostomy tract taken down and the fistula repaired. This surgery will be happening as early as next week (it depends on my surgeon’s schedule).. She said it will be complex, especially because adhesions (scar tissue) form when a person has multiple abdominal surgeries.. I lost count what number this surgery/procedure will be, but I do know I’ve had more than 20! 😞 I know God is with me wherever I go and will supply me with the strength to endure yet another surgery like he always does. But, I’m still sad that I have to have more incisions added to my body. I shared the lyrics to this song before on an old blog post (the song is called It Is Well With My Soul by Matt Redman), but it immediately came to mind again when I was thinking of scars. As the song below said, it’s a reminder to me that my scars can be a testimony to others of God’s grace in my life and how he has brought me through every single pain and sorrow. In the Bible, I’ve always thought it’s so neat that Jesus still had his scars after he rose from the dead—he had a new body, and yet, his scars were still visible. ❤️ Our scars are a sign of grace in our lives Oh Father, how You brought us through When deep were the wounds And dark was the night The promise of Your love, You proved Now every battle still to come Let this be our song It is well (it is well) With my soul (with my soul) It is well, it is well with my soul