Chailei’s STEC HUS Battle

06/26/2026

We are country living people and always will be.
Loving animals big and small and I 100% kids and adults to get to know these animals they can’t see in their city life on a regular basis like we do.
But please please please take more precautions.
We don’t want to see another family go through what we did just out of the time of fun. Granted even healthy animals can contain e.coli and bacteria proper handwashing and disregarding of farm clothes can be a HUGE saver.

‼️It's OUTBREAK season ‼️ Educate yourself to stay safe. MANY of our recent Parker's Promise kids are sick from direct or indirect exposure to farm animals - primarily cows/goats from family property, petting zoos, state fairs. We also have several suspected water outbreaks contaminated with farm water runoff.
Please take a moment to read this very important flyer issued from TN Dept of Health on FARM FUN and SAFETY!
⭐️⭐️⭐️⭐️⭐️⭐️⭐️⭐️⭐️⭐️

06/23/2026

🩷Emma update 6/23/26:

Emma, 2yo girl, currently hospitalized at Children's Mercy Adele Hall Campus in Kansas City, Missouri, with Hemolytic Uremic Syndrome (HUS), source unknown, since May 9, 2026. Today is day #46.

Update from her mama:
Proverbs 1:6-7 NASB
[6] To understand a proverb and a figure, the words of the wise and their riddles. [7] The fear of the Lord is the beginning of knowledge; fools despise wisdom and instruction.

Yesterday, Emma had a rough day after therapy. Her blood sugar was all over the place. Today's therapies went well. She took some water in her mouth and shook a pom-pom. She hadn't really done those actions before. She has been doing dialysis for 2 hours now and is getting a nutritional adjustment that includes more water. God keeps moving her forward. We would be lost without Him and your prayers.

Please continue praying for her kidneys, brain, nutrition, for her to start moving her arms and legs voluntarily, her ability to swallow, speak, and for her interactions with the environment to improve.

Emma keeps us running to a good God and trusting in His wisdom. Today we talked with the doctors a bit about knowledge. They kept saying how new research is coming out that is difficult for anyone other than the researchers to fully understand. Yet we know the Creator from whom wisdom comes. He is the One who guides their hands and directs them in Emma's care. He is the One who knows what is happening and is working in and through all things. The doctors have knowledge, but wisdom comes from a good and gracious heavenly Father. A God who is working behind the scenes but is displaying Himself as the One in charge of Emma's story. In Him we rest, and in Him we find our peace.

God is working! He is purposeful and merciful, and we trust Him with our little Emma. For He is the One who knows what needs to be done and will get it done. Thank you, Lord, for that! You are doing what only You can do on this journey.

06/10/2026

Who needs the popular red light therapy when you got blue light for your eyes and a 14oz of squishy butter( I have no idea why these are a thing now) 😆😉

2 days till our 10week vision eval. This mom is nervous to say the least. We have made little gains here and there but not many to make a HUGE difference to feel if it’s just time healing her eye or therapies every night.
Her eye muscle stretches have helped her left eye center more but if we miss a day it definitely shows because it shifts back to the original spot.
She can be away 4 ft and read with her left eye only without being blurry. But when we do our “brain loads” on our hart chart it gets hard for her to find her vocabulary words.
She can do her “flippers” at +\- .25 at a font of 10. Slower than font 12 but still correct.
Still no depth perception or peripheral vision much yet gained. At this rate we have a LONG road ahead yet.
Each night I give her a kiss good night before she says her prayers mom does a lecture to her brain and eye telling them to get along and work together 😆 if all these awesome moms can help out with this moms prayer and make the lecture stronger we can make these 2 organs talk to eachother

06/07/2026

Wonderful news for little Emma ❤️

🩷Emma update 6/6/26:

Romans 12:10-13 NASB
[10] Be devoted to one another in brotherly love; give preference to one another in honor; [11] not lagging behind in diligence, fervent in spirit, serving the Lord; [12] rejoicing in hope, persevering in tribulation, devoted to prayer, [13] contributing to the needs of the saints, practicing hospitality.

God gave Emma another great night. Today she transitions to liquid feeds and a changed ventilator setting. The goal is that she gets closer to going off the ventilator. Thank you for praying that God heals Emma as He restores normal organ function.

Praises of the day:
Getting her TPN (which is her IV) turned off.
She will meet her food goal at noon.
Had a great night.

God is big, and every good and perfect gift comes from Him. We praise Him for the blessings that He is doing in Emma's life. We are so blessed by the goodness He has given. Thank you so much for your prayers and support. God is working in so many ways. We praise His holy name! You are a part of Emma's journey.

06/05/2026

We thought this date would be different
We were told it would be different

In a way yes it is different but a good one.

Chailei’s 4th grade year will be a year for her to “sort of” remember. She has been through so much this year.
Relearning to walk, talk, eat, write, dress herself, read…. I could go on and on. Things that she had learned since birth she had/has to relearn in a short window instead of 9 yrs.

She started her 4the grade year the end of January and here she is on her last day of elementary school and now middle school starts.❤️
She has crammed so much in her brain since it started healing in December it’s no wonder she is more moody lol she deserves to be.
We have our normal days… then we have our normal “brain can’t load anymore days.” Those days are more and more frequent the last couple weeks where her vocabulary bank is smaller and holding a conversation can be tiring for her. Praying we can find a solution this summer to prepare her brain for middle school learning.
We’re beyond proud of her for even being in the state she is in wanting to do as much as she can. And so proud of her brother being there at her side(not 100% of the time 😂)

We didn’t think this day would come but it has ❤️ her school has been so accommodating for Chailei this year because they knew and SAW the progress she was making each day…week…. Month! Email after email for changing things because she didn’t need as much help as she did when she started. I can’t think enough all the help her school has done. Even though she hides now from some helpers and laughs lol right ms Jenny! You’ll have to sneak up on her next door ;-)

06/01/2026

The human brain is an extraordinary thing.
There is always something being found out about it scientifically, more core doors being opened to research, more ways to heal it all while being very stubborn.
We were told that Chailei would be disabled to not do anything herself again……Chailei’s brain said nope
Told that many memories that she had before the e.coli was deleted….still believe since many vacations she doesn’t remember

Told that she wouldn’t remember her time at Milwaukee or Chicago since encephalopathy can do that…….not believing anymore.

Chailei is starting to remember things from when she was back in Chicago.

Now my mom feeling are going fast as a humming birds wings on that because it’s a good thing but also terrified.
We were watching one of our favorite movies on Disney “don’t look under the bed” where she brought up her friend back in Chicago how she was like Larry(imaginary friend). I looked at her and said you didn’t have any friends down there besides me who are you talking about.
“Her name was Olivia and she helped keep the zombies away, tried to fight off the boys from eating and cutting my hair when I had my hat off but she went away when I started going back to school”
Chailei remembers her “baby”(the hedgehog she carried) Brian and even trying to “hop over a fence” to go get him. I remember that day like it was yesterday with her climbing on top of the heating vent and scratching the window to get out.

My heart sank. Her hallucinations started WAY before Shirley Ryan and was just able to express them after December 19th. So I’m wondering as time goes on what will all come back to her and what she’ll understand. It’s a big pill to swallow when I told her all that was her brain healing and could not seperate imagination from reality.
Which is 100% normal for people who have TBI’s. So of course there are going to be I’m right your wrong fights lol the only one she believes is that my fave was never a zombie
*jokes on her because i basically was from lack of sleep, eating and my hair styles 😂

While we see this as a part of relief she isn’t having the feeling of being left out in her life it’s also a nervous thing. It was a nightmare and wouldn’t want her to remember that scary part because that suppressed a big part of PTSD we haven’t needed to get to.

This week is Chailei’s last week of being a 4th grader and so proud of how far she has come since January and even before with proving people wrong ❤️

05/29/2026

Update on little Emma.💕

🩷Emma needs our prayers please

Update from her mom 5/28 afternoon:
1 Chronicles 16:34 NASB1995
[34] Give thanks to the Lord, for He is good; for His lovingkindness is everlasting.

Emma did not progress as much as the doctors thought she should. They want to have a team come to her room to place drain tubes in some fluid areas that built up in her abdominal area. Their big concern is that the ventilator settings, while working, are high enough that there is very little they can do for her if her oxygen levels decrease again. They believe the breathing problems are a combination of fluid pushing on the diaphragm, physical weakness, and her brain not communicating effectively. God knows what she needs. Please ask Him to continue healing her according to His good and perfect will.

God is still good; He has never failed us, and He won't. Whether Emma goes home to be with Him or stays with us, God is still good. He is still working! I do not know His plans or His will, but I trust Him. He is doing what only He can do. He is good no matter what the outcome is. We trust Him. He is good! He is in control!