Chailei’s STEC HUS Battle

04/29/2026

Teamwork at its best😂🤷‍♀️ I guess lol he’s helping her pass a level on a game of hers: he does the controller, she goes on YouTube and tells him what to do next lol

It has been some time since I posted on how this warrior has been doing the last couple weeks. We are staying busy and trying to get our girl back.
The last couple weeks Chailei has hit nearly all her goals in PT/OT that were created back in January when we came home from Shirley Ryan 😊
So we are back to a square one of a new chapter to her recovery 😊😊😉 Speech we are still trying to overcome whether that is reading, comprehension, memory to vocabulary it will come in time. Speech and vision are intertwined so it doesn’t surprise us that this one is taking the longest. Once Chailei shows really good progress with her vision acuity we have faith that all things will fall into place.
She is moving up in her recovery well enough that last week her PM&R Dr and her PT have given her the go head to allow her in ball/fast paced activities now 😊 During these activities she does need some encouragement and reminders that we started over/ had to relearn things in so many areas that now we are starting to relearn fast paced environments which we weren’t allowed to do until just now.
It does spring some doubts in her mind, but we always tell her that her body did it before her getting sick it just needs to be reminded. I always bring up the example of her cursive writing skills. Before her getting sick her cursive was…ok.. for a 3rd grader. But NOW her cursive is so much better than before. I show her the difference between last years and now since I keep yearly school items and she gets blown away. (neuroplasticity at its best right there 😉)

She is off Strattera medication that was given to her to help her brain focus, organize/plan out multi step areas. Over the past few weeks, we noticed that with her being on it since January and being back in school it wasn’t helping as much as what we were aiming for. One thing that we learned from it though within the past week is that Chailei is sensitive to even the bottom of the barrel side effects of any medicine really. Even came up reviewing all her different medications since being at Childrens then Shirley ryan review.
Strattera can give a side effect of blurry vision, pupil dilatation, and possible peripheral vision issues. Sounds familiar right?
Chailei had these vision issues even before we started the Straterra, but now being off it I think we will see more progress than being on it and slowing down progress 😊

School wise she is progressing slowly now, but we will still take the progress than hitting a wall. With help from her fabulous tutor outside of school helping her with things that she missed first semester, and 20-minute review during the school day with a teacher; the“puzzle pieces” she walked into when returning to school in January are coming closer together 😊

Praying that summer tutoring sessions and summer school will get her caught up in everything with her transition to middle school.

04/19/2026

It is nights like tonight that I tell Chailei to be honest, open in her prayers. Or to even do multiple prayers a day as I do. That she has gone through so much that it is ok to be selfish in them because she is a child in need too.
Her vision therapy is getting the best of us some days because we work so hard in them and we have either been making slow to no progress with her left eye. Today just a typical trip to Costco was hard due to running into things in her low peripheral vision or the crowd, foot speed. Makes us scared on the what ifs again.

But it’s the tears and faith while clenching a necklace that says pray.wait.trust that helps us complete each therapy.

04/17/2026

This past week I got the opportunity to have a video chat with Chailei’s Neurologist from Children’s 😊 she has been reviewing all of results for her MRI’S, her EEG and answering questions for me since we have been out of Milwaukee. Dr. Faris-Moeller will forever have a special place in our hearts.
Today she explained Chaileis EEG results with me rather than I trying to make sense of them alone. Overall, Chaileis EEG looked great. She showed no signs of seizures of any kind compared to the others done last year in August and September. As I mentioned before some of Chailei’s brain activity recorded as “slow” which indicated abnormal. Dr mentioned to me that this COULD happen with some kids depending on if they are sleep deprived or not. Which Chailei was that day.
OR
It could be an indication that cognitively her brain activity is slower than kids her age. After discussing things with her about what Chailei is like at home during the day even when she is wide awake, rested and alert, trying to determine if it was one of the two, Chailei’s brain is a bit slower than kids her age. Given how far she has come and proved so many people wrong we are confident that she could get back to normal brain functioning pace 😉 we just have A LOT of work yet in front of us for this year and the years to come.

She did find it quite interesting that Chailei does have some visual acuity problems and interested to see what they next 6 weeks of vision therapy does until she gets reevaluated with our eye dr.
It was a great talk and hearing her say that Chailei's case is very unique and rare in the Shiga toxin E.coli /HUS world, it pleases me to know that Chailei’s case could help another child yet again.

I always mentioned to Chailei that when she was there she NEVER played by the rules where I thought they were going to take her case and light it on fire 😂but as the west 7 nurses say, “there will always be that one Chailei.”
Tomorrow morning, she starts her passion for track again :-) while we have been getting back in some normal setting again it's great to be back in a setting she loves to be in now that we got the ok to start running again. In a couple weeks her and I will be doing an 8k (4.96 miles) together (definitely a walk/jog session lol) which neither of us have done. First of our list of races for 2026 :-) But she feels confident in being able to finish and that is all I need from her.

But this year is a year of many changes. Not to take things for granted because the phrase "tomorrow or the next day is never promised"... we felt that and are still feeling that. Back in August we were at a friend's house and when goodbye came to peel them apart, I told her friend "its not like she is dying tomorrow or next week. you'll see her again in 2 weeks lol" Those 2 weeks turned into over a month which Chailei doesn't remember that visit.
We have a few things on our bucket list this summer that we have not gotten to experience before, or she needs to relive them for the second time:-)
She would not be here without so help from everyone. And we as a family wouldn't have been able to get through it. We thank so many people for that and still help us with support, and especially prayers ❤️ From our family, wonderful church family, and community.

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04/14/2026

Chailei mentioned something to me that clutched my momma strings a bit on the way home from PT tonight.
“She feels stupid sometimes and what happened to her isn’t fair because somethings are said to her or how slow she is at somethings now.”
I’ll sum it up a bit

Show of hands who has walked into a room and forgot what they were supposed to get/do…

Show of hands who say to themselves” where did the time go”

Raise your hand if you were listening to someone explain things at the dinner table , at school, in a meeting or a get together and you listened to their words but couldn’t comprehend what they said

You know when you stand up fast and your vision closes in sometimes…

Or you run into the corner of a table or feel off balance

Can you make quick decisions on everything or do you have to think about things a bit longer

Moms out there… how many of you are guilty at asking your child if they were listening….

🙋‍♀️🙋‍♀️🙋‍♀️
These are SOME ( there could be many more depending on injury)of the things that Chailei or any other person with a brain injury has to deal with on a daily basis sometimes. Could be once a day… multiple times a day or randomly through the week.
I’m guilty of going ahead and asking Chailei at the dinner table asking her well were you listening to me or paying attention to what I just said
She tilts her head and sulks like she did something wrong.
But she didn’t do anything wrong. I did. I made a person with a brain injury feel bad about something they can’t control.

People with brain injuries literally have an injured brain for YEARS. Chailei is within the most crucial year on her injury that shows how much butt kicking she has to do to obtain a “normal” brain life as much as possible.
And in the dinner table example above is something she struggles with. She can listen but when it comes to comprehending what was said at that moment….. nope.

Your brain is built up with multiple departments and when they are injured and healing they don’t want to work together. In this case the things she can hear, her brain isn’t comprehending. Don’t even get me started on multi step directions lol But Those 2 departments don’t want to work together all day when awake. When brain fatigue sets in for her which could be like 4 pm most days it is almost as talking to a person with noise cancelling headphones.
Symptoms changes daily and anything can shift them.

She has come so far!
YES ABSOLUTELY
And for these days to have doubt about herself and feel the heaviness on what was taken from her hurts to see. This post tonight was to make awareness of some of the random things we may have once in a blue moon but for others… it’s their daily lives. Does she/they talk about it. Not a lot. Because then they will be judged sadly
The picture below is from last Thursday from her weekly session of Biogirls and I see her pray every night but this hits different with it being captured in a different moment. I can only imagine what she was praying for her in that moment and nor will I ever ask because it’s not my place ❤️ that is between herself and God. As it more than likely was when she couldn’t speak with us

04/11/2026

Spent some time at the YMCA this morning working on some of our favorites before track starts next Saturday 🏃‍♀️ and our races starting soon.
Box jumping was and clearly still is one of her favorite things to do. Got some form to work on but doing pretty darn good I would say.
She was able to do up to 24 inches a couple times but not as sturdy. She said that’s her goal to accomplish by summer starting.

04/10/2026

Last couple weeks have been busy busy 🙂 last week having endoscopy along with our therapies and Easter. Then this week her EEG and therapies as well.
The next weeks to come are going to seem weird since we only have our normal day to day therapies and no extras lol we will be asking ourselves what did we forget or miss since we have been used to this for so long.
Chailei's biopsy results came in from her endoscopy and showed she can come off another medication, omeprazole since she hasn't any gastric episodes since February 🙂 Her stomach did show signs of patchy chronic gastritis. But given everything her stomach as gone through since August it makes sense. When she threw up blood in February she more than likely still had some inflammation and when she got to be more active it came open. Now that it is healed, it leaves chronic gastritis. Nothing to be done on that as long as she is feeling well tummy wise. If she becomes bloated or has some acid reflux etc we will need to open the GI door again, but no follow ups needed if/when that we to happen.

Chailei's EEG results showed no signs of seizure like activity which is wonderful and GREAT news 🙂 The interpretation of the EEG that was shown to us on our portal was that the EEG was characterized as abnormal. It shows that Chailei's brain electrical activity is slower than kids her age and from a certain reading can show that is wide- spread but no structural damage. Even though she still shows signs of confusion, cognitive delays, attentiveness (which we believe is more vision related) she is still working hard on normal day to day things that we all take for granted.
Some things she wants to do are put on hold for now from her vision problems but in the past 3 weeks of doing vision exercise her and I (mostly me since I can see her eye lol) have noticed that her left eye doesn't skip as much as it used to when doing eye stretches 🙂 This week she has 4 exercises with 5 stretches. It's tough to get her to do them since we are working out the left eye quite a bit this week which makes her FIRED UP but we always tell her it will be different next week for blurriness 🙂 can't promise her any peripheral vision though since we are stuck on that one. But Drs office is confident we can get it better than what it is regardless of if we find there is retina damage. We will see in summertime. 🌞🌼☀️
Here is a picture below of her doing some vision homework called "flippers." Purpose of this exercise is to help the brain control the muscles inside the eye that control our focus. Right now, she has a "plus" lens of 1.75 that allows the muscles to relax or do less work. When someone looks far away your eye muscles relax where if it's up close your eyes focus. 🤓😎

04/06/2026

Labor Day…. Thanksgiving…Advent…Christmas… New Years…. All missed holidays that we couldn’t be together because we were separated. Hours away, a state away, hospital location or rehab location even farther away.
Today was the first day since July 4th 2025 really we got to spend a holiday BACK as a family of 4 and no FaceTime needed. Even though technology saved us during our trial❤️

Happy Easter from the Timm family

03/30/2026

It was a awesome day in Milwaukee. Typically she dreads having to come to Milwaukee but I think I have the trick for it😁😁😁 we had some time to kill before check in so we took a walk to the welcome area to see the fish, and see the garden we walked her in a few times. It was such a joy seeing her skipping and running the path I had to push her in in her wheelchair during our time here.
So glad we did that otherwise we wouldn’t have been able to LITERALLY run into one of her nurses on West 7❤️❤️❤️ with her ok we got to sneak up there and see her old room and for her to “meet” some of her nurses who took care of her and who she abused (they all remember her strength 😆) for 60 days.
It was so surreal being back up there and I did NOT get an ounce of PTSD just smiles watching her experience for the first time really where we lived basically for 2 months and her positive energy looking around.
She was shy at first seeing everyone but after a couple laughs of memories on things she opened up to them as if they were long time friends💜❤️💜❤️ ofcourse mom got emotional leaving but in a good way.

Going to her procedure today. She did great during and after. Her images look terrific. There was one red spot that he noticed but nothing to be alarmed about. No ulcers or anything they needed to fix. Her G-tube site healed up so well it took him a bit to find and only found it by pushing on her belly a little😁 biopsies will be back within a week to let us know how everything is going beyond visual wise. That will steer her path on the daily omeprazole. Visuals are a big thing for her to show her she is getting better medically. Going off medications is her show and tell sign that’s she’s slowly getting better since she doesn’t understand the other medical lingo.

We appreciate all the prayers and love shown to us since August and having them continue for her 💜❤️💜

03/30/2026

Everyone has their own words for each year that comes and goes. Going to keep 2025 to myself lol but my 2026 word is neuro plasticity. And when I mention this to non-medical people they are like what the heck is that.
I learned what this was back at Shirley Ryan and with help from another lovely momma who sees it just as much as I do with her son❤️
Thought I would give post an educational video on what it was all about since we do it on a daily basis.
Last prime example for Chailei: 2 weeks ago we had physical therapy and she wasn’t able to put one foot(darn left side) on a ball and one on the ground with her arms slightly out. Just standing there… seems easy right. After doing our homework for not even 2 nights she was able to do it. Here I thought it was our ball we used at home compared to the one at PT haha
Asking if we used to easy of a ball at home because she could do it the week after like she did not have that issue the week prior haha her PT just said “ huh… well now you decide you know how to balance good” 😂

03/30/2026

Having our trip to Milwaukee today for Chailei’s endoscopy
Since she has not thrown up any blood since February I have a good feeling we will get good results later with her biopsies taken

It will be interesting to see what her stomach lining is now since October and will give good idea where it will be for a long time if there is still inflammation places even with her Omeprazole being taken daily and eating food rather than formula fed.

Will give an update when she’s rocked it and on our way home :)